Oh my God I knew it..... you have no idea how good it feels to hear someone explain EXACTLY what I've been trying to explain to everyone who never believed me.
Yes torn from medical trauma from every specialist in your life. Including dentist who doesn’t want to work on my daughter due to FND and too many disabilities
@@icareforyourbrainwithdr.su7103I always had a feeling it was due to complex trauma. I could tell my brain was changing but doctors couldn't see it on MRI's. My brain was so damaged from the fear I lived in on a day to day basis, that my body shut down because I was unable to make decisions confidently so I was stuck in freeze response to the point where it paralyzed me. I'm only 26.. I've been this way for a few years now. It's like my body said "I can't do anything wrong if I don't do anything at all." And my brain has no way of convincing it otherwise... it's so painful when no one believe me...
AFTER living with FND for 3 years - this is what I have learned: 1) stress is killing and very bad for FND 2) try to eat whole food, sleep as well as pssible, exercise regularly 3) try not to focus on the symptoms, wear it lightly Sending love to everyone with FND ❤
I am so worn out with professionals asking me, "What is Functional Neurological Disorder" is. This puts me in a position to educate them, while they basically stare at me, in disbelief.
Right? I completely understand. I was diagnosed two years ago and I’ve thankfully had some very well educated doctors and a short diagnosis period, but I have heard so many stories about people with diagnosis horror stories. I usually have to deal with it with teachers, as I’m still in high school. It’s so difficult to get my teachers to understand my disorder and listen to my accommodations, since they are not just physical or cognitive, but also sensory and psychiatric.
Yep, happened to me.. GP looked at me as if I had 3 head as I went through my 18-22 symptoms. I really felt like I was wasting my time after the first two..😞
What are ways you treat this. My daughter just started this salt 28 she’s an occupational therapist and have speech tremors body tremors and tics it’s very sad to watch. Please advise
@@centralfloridasfavoriterea8459 Not doing too much is key, mental and physical exhaustion aggrevates symptoms. This is all new so still trying to figure things out.
I was diagnosed yesterday with FND, which was actually a huge relief - the validation of my symptoms and that it is not early onset dementia (I’m 53, with a strong family history of dementia on both sides). My Neurologist encouraged me to educate myself but I am still in need of a treatment plan. Interestingly, besides having cPTSD, I have hEDS, another poorly understood, diagnosed & treated condition. In the little research I’ve done, I found that there is a correlation of 3 out of every 5 patients with FND also having hEDS. This suggests that the problem pertains to more than a mind & brain, but also has a body wide aspect, possibly pertaining to neurons & connective tissue. I would appreciate a further discussion exploring this. Thank you for your mind saving channel & podcasts. I’m very grateful for the work you do.
Hi. I was just diagnosed 2 days ago with FND. I've had it bad for the last 10 years. She could have made this video to tell my story because everything in there was one-hundred-percent what I've gone through especially the being misunderstood and mistreated by the medical community. And interestingly I had suspected I had heds and was assessed but she decided I was just off of the spectrum for that but thought there might be something that exists that's just below that. So it's interesting what you're saying about the correlation between the two.
I was diagnosed last week and I also have M.E, hEDS or hyper mobility spectrum disorder. Adhd. I too have to educate myself and have 3 websites to look at but nothing to support me meantime and more worryingly for me due to recent hospitalisations, I have nothing to prove to nhs staff that my condition is something that they need to consider when treating me.. and or leaving me in a wheelchair for 7.5 hrs in A n E with a ‘migrain’
I also was recently diagnosed with FND. I also have hEDS, HaT, common variable immunodeficiency, Mast cell activation. Couldn’t some of these interact or cause neurological problems? Still trying to understand FND.
I have heds the causation.is autism even Dr beard who named it neurosthenia had autism found out after 28 years CFS pot fybromyalgia mine started after a fall just lost my mum to severe ms heds autism my father has ADHD epilepsy and had CFS so
No trauma here, just a burnout. Was misdiagnosed for 3 years, hospital in an out, disbelieve, relationships ended, it's been hell. And I'm one of the "lucky" ones, my FND comes in cycles, in between I feel great but when I get an attack, not so much.
Burnout often means allostatic load has been exceeded over time, and surely so much chronic stress in the body can lead to similar breaking point moments like trauma
I am one of the neuroscience nurse specialists for the Brain and Spine Foundation in the UK. We get calls for emotional support and a need for understanding. Thank you for sharing this valuable information as there is very little support or resources for FND in the community. However things are slowly improving
@@faebalina7786Unless you live near London, the NHS post code lottery won't be too helpful. My daughter got diagnosed with it about 15 months ago. A healthy intelligent girl, who regularly did rock climbing / kayaking etc. Went to bed one night feeling ill. Next morning could barely walk, and got progressively worse from there
@@Truerealism747 yea the medical system is broken btw i would like to be freinds with you i share my story on my the brave muriel channel so if you want to get to know me the video to watch is called the life of the brave muriel documentary an fnd battle
Hi. I have been in hospital for two months and been diagnosed with FND. I had a black out and fell down the stairs and was unconcious for 1.45 hours. I have lost use of my right leg and right arm, my arm is now ok. However my leg is not, i am in a wheel chair. I have had every scan going and nothing found. Then i saw a doctor who done one test on me and said i have FND. He asked me about past trauma and took mind of my leg by moving my left one and it moved with it, soon as i try to move it myself by thinking i cant. Watching this video has really helped me and has actually convinced my family i am not making it up. Thank you so much for explaining it in the best way i have heard. I will be watching you alot now. I am Dean Moore from Wales (Tom Jones Country) in the UK
Look up , Brain and Mind at the FND specialists Wellington hospital St Johns wood London. Practice tai chi every day , seated is ok too You need somatic movement treatment , Google it. Peter Levine. Move ,tai chi .
Thank you soo much for sharing this. I've been needing this for 6 years. Everything you said is all soo true. Dr's run all the tests to rule everything else out, then they just call it fibromyalgia or dysfunctional system, and then you're on your own with the unknown, and your life consists of research . I'm soo glad to have subscribed to you and to find this video today.. I wish you were my Dr. Your rhe best.
I also have hEDS, but my trigger is CRPS type II (the presence of nerve damage). My tremors & subsequent myoclonus started 6-8 months after getting CRPS (post bunion surgery & nerve damage from tight cast, which the ER refused to remove due to crushing pain and blue toes). I have also considered that my myoclonus and tremors were caused by antidepressants they gave me as part of my pain med 'cocktail' for CRPS pain since there was a correlation between starting them and the start of those symptoms. First I was told I had "conversion disorder," & I saw 3 psychiatrists which ALL said "NO CD." If it was CD (psych), then I wanted to take care of the psych issue. However, going through CBT, PT, med regimen (total 38 different meds), ketamine infusions, HBOT, and of course therapy, they have not resolved. I think they think it's psych because the sx are intermittent. However, I also have other comorbidities (central sensitization w/ allodynia & hyperesthesia, dysautonomia, POTS, MCAS, arrhythmias, anxiety/depression) from CRPS, which MDs either don't understand or contribute to CRPS....thus, 'it's in your head' &/or 'it's in your brain.' Either way, no one can rule out or diagnose anything and there is no treatment, much less cure. But for CRPS, I would not have these symptoms! My MDs always elude the fact that I have ongoing CRPS. My CRPS is NOT in "remission" and still meets (after 7 yrs) Budapest Criteria! So to be now given a FND (from CD) and thus I DO have a known neurological condition, which is ignored. Dr Sullivan, I am open to your knowledge of patients with CRPS & FND. Thank you.
I have most of your diagnosis decades have you been checked for autism.thud us route cause nervous system.goes haywire after any injuries etc causes mcas the hers is part of ADHD autism mine started 1997 at 17 after a fall.
I was diagnosed in 2014 with pseudoseizures, then non-epileptic attack disorder (NEADS) then Functional Neurological Disorder (FND) which is from my understanding, the same diagnosis just with updated terms / names for the condition. Your points from the 8 minute part onwards hit hard. Thank you for your words and the respect you have shown for myself and people like me in such a refreshing way. I've saved this video so I can show those people in my life that can explain me better than I feel I sometimes can.
I have just been diagnosed with FND after a SA neck injury. I had the neurologist tell me I am manifesting my symptoms & go to see a psychiatrist & discharged me ! A few days later I couldn’t walk I went to the Physio & she rushed me into the ER. I am in so much pain in my back & hips . They drugged me up & sent me home . It’s been a week I still can’t walk. I got a phone call from the Physio saying the hospital diagnosed me with FND. They never told me ! I am so upset I’ve been left without information & what to do next . I still can’t walk & the pain is excruciating atm. There’s no plan for me the hospital failed me .
Two and a half years with FND debilitating symptoms! All tests been normal yet I've not been having a good time. My symptoms started after a neck choke, thank you for this video ❤ keep fighting and pushing x
Same I have just been diagnosed with FND after a neck choke/strangulation & injuries to the back of my neck.You’re the first person I have seen so far that also developed FND from a neck choke. 😢 it’s still fresh , symptoms are very debilitating I haven’t been able to walk in a week it’s scary.
I cannot say thank you enough for this video! I have just been diagnosed this last month with FND and was left completely confused and with no understanding and just being left with no direction and no real explanation. After speaking with a nurse practitioner for my neurologist I was just told there is nothing to be done. I contacted next my internal medicine doctor as he wanted to see me after the neurology findings. Now I’m told he won’t see me and it is not necessary to see me for another 6 months. I said I thought he wanted a complete neuro work up and they said it was done and now I’m supposed to see him. And she just repeated 6 months. And my family physician doesn’t know what it is. So I’ve started searching online to understand as I was just told from neurology they don’t have anything more for me. Needless to say having seizures, becoming paralyzed, not able to walk, not able to lift my head and having my eyes just close and not open for hours and being told nothing has been terrifying. I cannot tell you how much I appreciate this video. How much I feel like I have a direction and know how to get help and where to go. Thank you so much for this explanation and kindness. I’m beyond grateful. As I’ve been completely lost and confused and have felt I have nowhere to go and have been left wondering what does everyone mean? They are just leaving me like this. So thank you! So much.
Hi Leah, I am so sorry this is happening to you. Please watch my podcast with Lorraine who lives with FND. Her wisdom will help you! Advocate for a health psychologist please who has expertise in FND. Start at psychologytoday.com. Clarity of your diagnosis is an excellent start to healing!
I'm in the UK and my Doctor text me the link to the neurosymptoms website created by Professor Stone. When I saw the Neurologist in Scotland he said he was very fortunate to actually work with Prof Stone. Basically though...he couldn't tell me anything I didn't already know. I had already studied fnd, anxiety, chronic pain etc etc....and was in counselling, doing yoga, meditation and generally taking better care of myself. All these things relieved my symptoms. Was also reinforcing those networks when I noticed issues and did lots of swimming that seemed to completely make my symptoms disappear. FND is such a complex and frightening condition but I've learned it's important to have faith and trust the process.
Did you ever suffer from the fatigue that comes with Fnd? My daughter has Fnd, and whilst she's made massive recovery steps, it's now the fatigue which is the real barrier to a more normal life
@stuartburns8657 I had all kinds of weird problems and had short spells of fatigue during my ironman training. The fatigue was due to FND or a traumat related 'freeze' response and was usually only for up to a week. Had several spells of it. I have less energy than I had before but I can work fine and still do some triathlon training but I've had to cut everything down. I am recovering a lot and I no longer get those short spells of fatigue and I tend to only have 1 symptom left which is the chronic pain
@@RunPJs Appreciate you finding a moment to respond. My daughter had a catalog of issues, but with misc CBT / neurophysiology rehab she's 'better' It's the fatigue that's the really frustrating element for her and us. She'll be 18 in the summer, and she's barely able to last 4 hours in college (16 hours a week course) When she gets home, enough energy to eat and she's pretty much straight off in her room to relax / have an early night.
@@RunPJs Hope things work out. We have been looking at a vagus nerve stimulation devices, in the Hope it might help with the tiredness. Perhaps look at that for the pain?
@stuartburns8657 that's way too young for this awful condition. I'm sorry to hear that! Yes I've really learned a lot about the ANS and also the limbic system, particularly the amigdula. My pain started on my tongue 2 years ago at 50, and moved all around my mouth and now has moved to my cheeks. It's not as bad as it was...what helps is doing everything I can to stimulate my parasympathetic nervous system. Things like meditation, body scan, breathing exercises, swimming gives me 100% relief and yoga etc. That's how I provide myself with ANS stimulation. As well as not working as hard and getting so anxious about stuff. Spending time outdoors is good too. I hope she recovers...I hope she can find some gentle steps to try to recover 🙏
As someone with FND, it is wonderful to see that more people are talking about and providing information about Functional Neurological Disorder. Thank you. I think it is so important for people to be able to research and learn as much as they can, especially from informed, fact-based sources. I do worry about some of the content in this video though, and the heavy focus on psychological trauma as being such a major cause of FND. The latest research is very clear that the most common ‘cause’ or trigger of FND is a physical trauma (a car accident, fall, illness etc), and that sometimes there is no clear or known trigger at all. I also question statistics used in this video such as that people who experience childhood trauma are 8x more likely to develop FND. Given the limited knowledge and understanding that even FND experts have about the disorder, I think it is important to give information about the sources used if you are going to provide a number of statistics to prove that current medical research has proven a link between FND and childhood trauma. I also think people with FND or those who are related to them would like to read these studies. There is also some misinformation such as what Positive Symptoms are (being described as physical movements) whereas they are in fact the evidence of symptoms being able to change, reduce or cease momentarily with distraction. Fatigue is also just a very real symptom, not simply a manifestation of medical neglect. I can see how this explanation can be very helpful though, especially if you have experienced emotional trauma and have FND, and it is wonderful to know that FND is being discussed and recognised.
My 16yo daughter (at the time) developed Fnd 14 months ago. Healthy / intelligent girl. No trauma, no accidents, no injuries. She was struggling a bit having just started 6th form, but simply went to bed one night a bit earlier than normal, then could walk next day. Loads of follow on symptoms, random arm spasms, hand griping, tic and tourettes etc. She's made good progress, but it's the fatigue which is the real life impediment now I fear
Do psychiatrists treat this childhood trauma with medication? To me it sounds like another name for anxiety & repressed trauma. I’m not hearing much that’s not “a mental health struggle.” As a vestibular patient who was not abused, I can’t relate.
I was diagnosed with FND right after my diagnosis for long covid. Here's the order of things that happened: First, I had a bad year anxiety wise bc I went off my meds (I'm all anxiety, not depression). Then a best friend from childhood had a medically assisted death after being diagnosed with stage 4 cancer. Then I got Covid (which was just an upper respiratory "cold" for a week. THEN...the thing that pushed me off the edge...long covid. I got massive vertigo, and was bedridden for a week and a half. When that was over, I got horrible nerve pain in all my limbs (from bicep to fingers and thigh to toes) This nerve pain was strong electric shock sensations, pins and needles, and burning. That drove me nuts and my anxiety sky high. I got put back on anxiety meds, and take Lyrica for the nerve pain which WORKS. 98% of my nerve pain is gone. BUT, when my anxiety gets a little out of control, my nerve pain fires back despite the meds. When I get a handle on my anxiety attack, my nerve pain goes back to being managed. There truly is a brain-body connection. I DID get long covid, but the bad year I had before that mentally definitely left me as a sitting duck for FND.
I have just been diagnosed the other day after years of non epileptic seizures, mostly while i’m sleeping, i had all the epilepsy checks, i got diagnosed with non epileptic seizures. I have a tremor that starts in my right arm, it can get really violent and turn into a full blown seizure, i basically have to hold my arm down when this happens. I have not had a seizure for about a year and half until a few weeks ago, which was disappointing, it all sends me into a very dark place, i absolutely hate having seizures they make me feel like i’m slapping myself when in reality i am not, awful feeling. When they start i feel really paralyzed , start fitting and then pass out, i also suffer with biting the tongue when this happens, i get terrible mouth ulcers and end up not being able to eat at all. i’m only in my 30s. I am glad that people are getting diagnosed instead of doctors/neurologists not knowing how to help people. thank you.
Really glad I’ve found this. I suffered a very traumatic experience some years ago from a waterskiing accident. It left me with partial paralysis for along time. I have extensive sciatic nerve damage and a prolapse disc. My mental health has become quite poor over the years and I’ve developed fibromyalgia, ankylosing spondylitis and arthritis. I’m having days where my body shuts down with fibro symptoms, and my body will literally shake like I’m having a epileptic seizure. I don’t have epilepsy or ms, however my ability to walk properly, my speech is unrecognisable at times, and certain parts of my body will either spasm or I have uncontrollable shaking. I’ve addressed these symptoms to my doctor, which he’s got me to have a CT scan, with no foreseeable cause as to why I have these debilitating symptoms. I’ve noticed when I’ve have periods of stress and high levels of anxiety my functioning of movement is crippling and my mind just shuts down. It feels like I’m experiencing, too much information overload and my brain ceases to function. I need help to walk during these difficult moments and my body feels like it’s not willing to work for me. I was sexually assaulted 13 years ago, and all my symptoms have gotten progressively worse. I haven’t seen a neurologist yet, I’ve only just stumbled across this video, so a lot, if not all of what you’ve just said resonates with how I feel and experiencing. Thank you for sharing this. I’ll be looking into being assessed for FND.
Omg… thank you for making this video. I was just diagnosed yesterday and I am blown away. I was diagnosed with somatization disorder in the ER when I went which infuriated me. I also have BPD, CPTSD, ADHD, an ED and a lot of physical pain. All of the symptoms started after my concussion in January.
I also got it bad after a fall on my head. Could have caused inflammation and psychological stress sustains that, partially. What helped for me was Q10, linseed oil, and some other things like eye tracking exercises. Cry, or sleep when you have to, that also relieves. Your brain is literally inflamed.
@alysonbye944 hope you are receiving or able to access forms of help and treatment that will assist, and hopefully help recovery overall. Very sorry that you are suffering FND. I have_had a long history with it, and would be open to listening, learning, hearing yours and others experiences and insights, continuing discussion if you ever felt as well. Take care
I was diagnosed 2 weeks ago, and honestly made me feel like I was crazy. I have been telling Dr's and neurologists that some thing is wrong for a few years, and that my tremors, and seizure like symptoms were NOT cause from my normal migraines (had since I was 3). But was told everything from yoir faking knock it off, to are you seeing a counselor, and even given the suicide hot line 🙄 after diagnosis I dropped like a hot plate. I'm now advocating for my self.
@@citlalie9791yeah and not no until decades for me 27 years CFS pots now fybromyalgia diagnosed now heds autism ADHD albeit had to push to get diagnosed.just list my mum to severe ms autism heds my grandfather had simple life had no pain apart from detached retina slipped disc.and Parkinson's at 75 all heds autism caused
@@citlalie9791so true albeit lot of us undiagnosed.after decades if chronic symptoms labeled fnd fybromyalgia CFS pots pelvic pain seams they don't want us to no.sins now diagnosed 13
I have had FND for 40 years. This is the best description I have ever heard. I can't thank you enough for making this video. I will check out your podcast right now. Thanks again
I thought my fnd was with a car crash,but always been on the end of narcissistic abuse and 45 now,so been a difficult few years facing both and hopefully more education and help,will keep coming
THANK YOU! An exceptionally clear, comprehensive, and yet concise, explanation of FND - a little understood and therefore elusive of diagnosis condition. In months of investigation to "label" my symptoms,, this is the best snapshot of FND I have encountered: bravo!
Thank you for this video. It is rare to come across well informed, experienced and compassionate concise information regarding FND. I first suffered FND, conversion disorder when I was 16. Severe jerking, tremors through head and left limbs. The initial 'bout' lasted almost 2 years until the movements simmered down gradually over that time period...from jerking to tremor to no movement. I had 4 'relapses' over an 8 year period in which the severe jerking returned, and would last anywhere between 6 to 10months. 21 odd years later I have had to confront a lot regarding my childhood and lifetime of mental health disorders. Currently diagnosed with CPTSD (im a victim of reptitive sexual abuse, grooming, normalised, incest from ages 5 to 15), MDD, ADHD, chronic pain and others. I still suffer from physical symptoms that I experienced during more severe periods of FND, e.g. muscle weakness, feeling loss or detatched from limbs, slight tremors...however I have no idea how much other variables such as my various disorders, mental health issues, living circumstances, development, stress etc compund on these FND like symptoms. I am not sure if the FND still persists after all these decades but manifests differently? Anyway thank you again for this video. Solidarity and sorry for anyone suffering or who has suffered FND. Hope there is more FND education, awareness, research, treatment etc in time
Sooo interesting. Especially the distraction part. Similar to when people with Parkinson’s become frozen when walking….and counting out loud helps some to start moving. The brain is amazing
Thank you so much i was diagnosed in july i spent 19 days in the hospital thought i was dying i end up being bed bound . Hospitals is a trigger of mine so being there was making me worse worse they ruled out everything else and said i have conversion disorder from too uch anxiety taking over my body . I was angry lol because to me it sounded like its all in your head. I decided to find videos so i can understand what is happening to me found you so thank you for caring. Been in therapy a long time for cptsd so i can see it make sense but its terrifying.
It may be diagnosed more but it's not accepted really and there's a great deal of ignorance of it within the medical system. There's no treatment or care here either.
Your information was REALLY helpful for me. My 79-year-old husband began to have these issues (pins and needles and neuropathy in toes and feet) about 15 years ago. The doctors did not know any causes of his symptoms or could not give a diagnosis. (One doctor who did a nerve test suspected Charcot Marie Tooth Disease but she retired soon after.) He does have extreme fatigue, cognitive complaints, sleep disterbances, pain, numb and detached Yes, he struggles with emotions and I never understand why. He has never discussed any trauma (except the fact that he grew up in a very wealthy town and his high school classmates had everything and he was the last of four children of a middle class Italian family. His older brother tells me that "he" had a magical childhood and he is very grateful for his upbringing so it hard to know why my husband feels deprived by his childhood. His neurologist tells him this..."There is no treatment and no cure. See you in six months."
Deep thanks , along with being post stroke, cerebrovascular disease and fibromyalgia, now diagnosed with FND too. As an ex psychiatric nurse am finding all this interesting ❤
The amount of times I was told I was just on drugs and drug seeking. The amount of times my family and friends had to argue with drs about my non existent drug abuse. The amount of exasperated scripts written and shoved at to just leave, that I’ve never even filled. I can deal with damned pain. I can’t deal with the system that dismisses me.
100% agree with everything you have said! I too have been diagnosed with FND and knowing me as well as I do mine has been brought on by numerous traumas and I know my triggers. I have a Pain Management Team and they were blown away with my understanding of the pain I suffer on a daily basis. Two years ago suffering my last traumatic event I was diagnosed with an auto immune disease; Type 1 Diabetes at the age of 55, no history in family. You have just confirmed my personal thoughts including the realities of my symptoms. Thank you so much! Yours from England x
What I've come to realise is that it's the chronic fatigue that comes with Fnd is the real impediment to a more normal life. Many / most do eventually learn of manage their symptoms, but the fatigue means they can typically only do a quarter of their former normal activities. They can push it beyond that, but it leads to a boom and bust cycle
I currently have being diagnosed with fnd, but i have no trauma in my childhood, yet i have lost the ability to speak fully, i can't pronounce words or make sentences, yet they can't give answers, it seems a cheap diagnosis and don't understand why suddenly i have lost the ability to talk
@@icareforyourbrainwithdr.su7103 i have seen one neurologist and waiting to see a specialist fnd neurologist in the next few months, but my childhood was loving and caring, nothing that would be remotely classed as traumatic, the fact they lead down the path of trauma is a easy route to send you down, as they fully don't understand why, i have suddenly lost the ability to communicate, thank you for your response
@@throbbinhood7867 It can be other triggers rather than psychological trauma. Medical issues, financial stress. Think about the way I describe factors in the podcast and how that may map on. I hope you find th answers and support you deserve.
Dr. Sullivan I am so glad I found your channel I was diagnosed with FND 4 days ago. The neurologist gave me a handout with one page that described FND and another page that had three websites. She then proceeded to tell me that FND is quite common and for me to find a physical therapist that is familiar with FND. She then told me to find a CBT specialist from the website psychology today. She also told me that it would be difficult to find these people. I’m feeling so overwhelmed with this task because none of the therapist on the Website have CBT listed per se. I asked her for referrals and she I guess is unable to give me any referrals. I am on my own i am 75 years old and the dizziness, brain fog and tremor are driving me bonkers. I am sleeping so much now it is just crazy. In a way I’m grateful that I sleep so much because then I don’t have to deal with fibromyalgia, pain or this tremor. But this is not living! I see that you practice in North Carolina which is where I am living (Hillsborough). Would there be any chance you could guide me in the right direction?
Dr Sullivan, thank you for this video. You mentioned bad drug reactions. Have you seen medication withdrawal (long term SSRI use) turn into FND? I've been diagnosed with PPPD. Do you consider this an FND? I have had it for 14 months after attempting to get off. It was a very stressful time in my life. I have seen 6 psychiatrists and 4 neurologists. FND has been mentioned. Is there a way to distinguish between a pharmaceutical injury and FND? All my vestiblar testing is normal and I'm disabled by this at 33 years old. Thank you
I was diagnosed a week and a half ago. my symptoms are already reduced. my doctor was very validating and compassionate thank God . now for treatment. only one or two in the entire area that treat.
Thank you for this video!! I went into the hospital 2 years ago with Covid Pnemonia. During my time I was intubated, my heart stopped, and was in Icu. 2 years later I still have left hand tremors, weakness in my left leg and walk assisted with a walker. And.. developed seizure disorder following treatment. While I know that's a lot, it happened after my husband had been diagnosed with stage 4 lung cancer with mets to his brain. So there was trauma before I got sick with Covid. Just knowing a name for what I think I have been dealing with gives me hope!
Always so insightful and presented with such warmth. I have ET and CD. Have had ET as long as I can remember and CD developed about 8 years ago - I'm 52. Tried botox for the CD and got a VERY sore neck. No meds work, tried Propranolol (20-90mg per day and Primidone (helped a little but was so wasted I couldn't function) . Am a bit over it all but your info inspires me to look deeper and elsewhere for relief. Thank you Dr Karen for all that you do. So grateful.
Thank you sooooo much for this video. I had my first experience after receiving Covid vaccine. I been DX with FND and had an unpleasant experience in the health system, so I'm learning how to heal and deal with this on my own. It effects my family and myself but I've been able to improve but have symptoms here and there. After 2 years I'm still confused on what is going on with my mind and body. Thank you for researching and bring awareness to FND.
I'm stuck in between the neurologist and psychiatrist, with a PhD therapist's opinion seemingly that I have FND. Or in my case, FMD, as dystonia is my primary neurological symptom. There is not a lot of info on FMD. It seems that with dystonia patients the functional label is perhaps overlooked, or, is much less of a possibility. So I am only just now finding the larger group of FND. It's becoming clear to me that my therapist has communicated to both specialists, and perhaps my PCP, that this is her evaluation. I think this because I am being told the same reasoning and explanations she tells me, that I have seen "so many doctors" and "none of them can find anything wrong." I do not at all discount FND as one of several causes of my symptoms, all yet tbd. I am pretty knowledgeable about theories and interested in the mind-brain-body-soul connection. I have been patiently listening to what she has been inferring: that I not only have FND, but also Somatic Symptom Disorder. But I don't see how a single health care professional, even if she is a PhD, should make a decision like this unless that have reviewed your medical history AND in conjunction with medical doctors. This therapist knows little of my overall health history or symptoms. She does not seen to be familiar with types of MDs such as Miege. She sent me to be tested for autism and I was diagnosed with ADHD and cPTSD. She got the results last summer but seemed surprised when I mentioned it recently, and asked me what the c meant. It's clear she doesn't have the whole picture, so how can she decide there are no medical/physical/structural reasons for my symptoms? The worst part is, I really like her. I have a terrible tendency, especially as I have been getting more ill, to be overly trusting of people who I think can help me. But I am realizing that perhaps she has not been helping me at all. I discussed this with my psychiatrist and he suggested I ask her to review my medical records, and to discuss with me why she thinks I have seen "so many" doctors, etc. The original neuro is putting me off, it feels. It is a small professional community and I am sure no one wants to disagree. But I feel more and more judged, and this has been going on for over a year. I'm not really even sure what has been accomplished. I'm being told to change my career to something less stressful, not keep chasing doctors, take various psych meds that will desensitize my body, and accept that my symptoms are a result of changes to my brain due to stress. and anxiety. That's about it. Unrelated to the therapist, I see pain management for botox/dystonia and steroids/cervical arthritis and those have helped greatly. I have had little benefit from psych or physical therapy, both of which I was doing prior to the onset of the dystonia. I'm told by some that botox won't help FMD, and therapy won't help the neurological disorder, so maybe FMD isn't even a correct diagnosis. I just want to do all I can to feel better and get some bits of my life back. I will continue to watch the rest of your videos now that I have found you. Thank you.
I think I have this. I am normal most of the time, but if I get stressed or angry or upset I can become paralysed for a short time and if I am going through a lot of anxiety I can go through days where it is hard to walk and get about. I keep getting told my collapses and periods of unresponsiveness are avoidance behaviours, which I hear as it being told that I'm putting it on, even though it isn't meant that way. I have a friend who has been tested for epilepsy 4 times because of having seizures and each time it has been confirmed that there is no epilepsy.
I was just released from hospital after cat scans, an MRI and speech therapist confirmed as "not a stroke". I explained to the first response while going through the in and out series of spasms as best I could its not T.I.A. but they all looked at each and asked the question, what is F.N.D? I'm about to give up my job due to F.N.D and Fibromyalgia 😢 and it scares me coz you feel alone as all vitals and brain scans are normal which makes me look like I'm faking but I am so exhausted 😔
This has been the absolute best in explaining so much in such a short time. I just want to say thank you from all of us suffering thatnk you so so much ❤️
WOW! Thank you for putting this out! I had been in and out of doctor's offices, for 6+ years. Soon, I was gaslit, every time, I'd walk into a doctor's office, they already had formed an opinion. In 2017 a young doctor seemed to actually care about what I was saying, she then gave me a PTSD diagnosis. Well...........needless to say, I got very angry with the diagnosis, left went home and told my husband, he was like finally, that makes a lot of sense. I didn't get it however, I mean I was never in the military, I just didn't understand the diagnosis. Over the 6+ years, I started to show symptoms of not being able to talk mid sentence. I was totally cognizant of my surroundings, I just couldn't talk, the words wouldn't come. This lasts anywhere from 20 seconds to over a minuet. Then, when I do finally speak, it's with a very bad studder or repeating the word I was left at over and over again. In 2021 I was sent to a Neurologist, he asked me some questions, and once again PTSD was the diagnosis. My vision by this time would be wonky, blurry, double vision, my gait was way off. Especially on the right side. Many doctors have just shined me on. Finally, in Sept. of 2022, I woke up one morning and it seemed as if I was in a dimly lit room. I kept repeating in my mind the same thing over and over again. I walked out of my bedroom and my daughter was like mom, are you ok. I remember going back to my bed, the next thing I knew, there was a room full of paramedic people in my room. I was having a type of grand maul seizures. They thought I was having a stroke. I couldn't talk, I shuddered so badly they couldn't understand me. I couldn't understand me. Next thing I remember I'm in an ambulance, headed to the hospital. I must have had 7-9 grand seizures. FINALLY, a doctor came to see me. He was a neurologist and had come to Central Oregon, where I live from the NE, Maine area. My seizure's started to subside, he asked me questions and gave me tests for well over an hour and a half. He was so kind and said, "I believe you have what is call FND". He went on to explain it, said it wasn't well known in the states yet, and gave me a website to visit tat was based in the UK. I couldn't believe it, when I went to the web site, it was like reading my life's story. I've been able to use tools to see, the symptoms, when an attack is going to take place etc. I have good days and better days, but every day is a coping day with this. I recently fractured my calf and on the way to hospital, as soon as we got there, I had a huge seizure. I had to try and explain to the staff what was going on. They didn't want to listen and kept insisting I fell and hit my head or something. I was like I DIDN'T FALL!!! I am so very thankful you put this video out, thank you.
I have been diagnosed with FND been suffering for the past 3/4 years. My left hand side is not working well and walking is not so great. All I can say is keep going I'm in the UK and the waiting lists are very long! So thanks for sharing I'm on a mission to get my body back it's been alien to me for too long
Hi, and thank you for this amazing eye opening video. My experience with FND has started right before I gave birth to my daughter, 2 years ago, staring with blurry vision, trouble using the toilet, NHS blamed it on birth calling is 'one of those things' (?!), c9ndltinuing with what it looked like 2 ministrokes, 1 seizure, loss of control of my lower body, bladder and bowel, sudden swelling of the face, fatigue, not being able to focus or understand even the simplest conversation, eye lid going droopy etc. As I'm writing this comment, I have yet again brurred vision, like after looking right into the sun. I have had a head MRI 2 years ago, it came back normal, a CT scan about the same time, came back normal, a spine MRI about a year ago, came back normal, eye clinic scanned me and said it's all normal. So everything seems fine, yet i get flare ups of various weird things happening to me. It all makes swnce now, after finding out about FND. I need help and I don't know where to start. I was watching your video in tears. Hopefully I'll be able to dot the i regarding my medical condition. Sorry if I made any mistake, I can't see very well what I'm writing.
As long as doctors don't even know what FND even is you cannot treat it. 2nd is the lack of medication and emp technology that I know does work and should be covered by medical insurance.
This is so refreshing to see a medical professional validate FND. Thank you! I was diagnosed over a year ago and have a multitude of symptoms. I did get a second opinion today and he thinks it is FND as well. He is ordering a brain MRI, lumbar puncture, and blood tests to rule anything else out. Was wondering if you take tele-med patients? I'm looking for treatment and it's definitely hard to find with FND. Thanks! :)
Thank you Doctor. I was finally diagnosed with FND in 2019. I can't work, though I keep trying to, due to the cognitive effects. Memory is a real problem as is manipulating aural and read data in my mind.
I started having issues right after getting my first jab of PZ in 2021 my symptoms kept progressing over the next year and until they came to a head and left me bed ridden for months. 8 months later I finally had a diagnosis.
I was diagnosed with FND last year. What happened to me I will be going to a doctor's appointment for an injection or go to the hospital for surgery. I have only had two events. The first event I had shot like normal in my lower back I was fine got up and started talking drunk and couldn't walk I was put back on the bed ran got the doctor and kept saying I don't know what is wrong and my body became paralyzed from the head to my feet and could not speak or move. But I could hear and see and understand everything. They told me might be having a stroke and called 911. I stayed one night with no answer and took almost 7-9 hours to talk and move again. But the entire time I was treated with horrible treatment. I could not say or do anything.
Hi, I have been listening to you for several years now. You have helped me alot. But some times I forgot what I learned. I don't have anyone helping me with my brain problems. Sometimes I think I am not real. I am getting so depressed and sad. My dad died who I lived with. We helped each other with our crazy brains.😢
You do not know me, but I just wanted to say I'm thinking of you and your struggle. Coming and reading these comments resonates so much with my experience. As hard as it is know that there is a community here that understands, even if Drs don't. Stay strong and good luck
Please stay positive and avoid isolation.Find out what is available in your area by way of support groups for those with neuropsychological disorders.And ofcourse try to do physio , any activities that you need support with get them if you can .I don’t know what country you are in and what support is available but I know anxiety and stress make symptoms worse.
I have been diagnosed with FND, I am in Canada, and don’t even have a family doctor. I have had horrible experiences with doctors since I was a young teen. I don’t know where to get help. And my FND is ruining my life.
was diagnosed today. I was put into shielding in 2020, but still ended up with Covid. I was hospitalised with it as well as Pneumonia. I then got a blood clot in my lung. I have never made a full recovery and have Long Covid. It was initially thought I may have dementia. I think the Covid and Long Covid link is interesting
No support at all here in the UK for FND patients. I have been diagnosed two months ago after one year and a half of running from doctor to doctor...doctor gave me the diagnosis and a sheet of paper with some websites to visit...and that's all.. no treatment plan nothing ! We can't find any help here in the UK
I have yet to find a neuropsychologist who provides treatment. Ever. They seem to believe their role is diagnosis. I have FND. They have not provided recommendations to my PT, whom I had to explain what FND is. I provided her with research, etc and of course, documentation of my diagnosis. She is in her early 30s and had never heard of it. She has a Doctorate. I am a retired, LCSW.
I was so confused whenI was taken to Barnes Jewish hospital and had a tremor in triage was rushed back to a room one doctor asked me what was happening and I said I have FND it was scary when two of the doctors look at each other and shug there shoulders and Ardmore confused than me like I told them this hospital gave me the diagnosis!! How can I feel safe here if you I t even know what it is y’all diagnosed me with!!
My daughter was diagnosed with FND 2 years ago. She is unable to walk & lost control of her bladder functioning. After seeing my daughter wasting away, the neurologist who diagnosed her thought there might be more going on. He ran all sorts of tests, but all have come back normal. He sent her to a genetics doctor & he said FND. We aren't sure what to think at this point. We are on our own. It's extremely frustrating.
Thank you Dr Sullivan. Can you please tell me what to do when your neuropsychologist is the number one person who does NOT believe you. Just because I am still working in the pharmacy, he thinks that I am making things up and exaggerating. He invalidated my neuropsychological test, sent a report to my neurologist who I see for migraine, in which she sent me to my primary care without seeing me. You are the very 1st person who I have heard talking about such thing, FND. I have been battling this for years, symptoms are getting worse. I do know it's not in my head, and you just validated it. Can you please give me any suggestion. I am hitting a wall again.
Thank you for this video. I have an autoimmune disease (Sjögrens) AND a dissociative disorder. I have had neurological symptoms for 9 years, but I am stuck with getting a diagnosis for this because no type of doctor seems to be responsible for it.
I have FND, had significant child abuse and grew up in an unstable home and my dad left me as a young child. I had very severe anxiety attacks that started after my childhood dog died and then right prior to the FND developing, I went through a very horrific period of being pregnant and tormented by my evil mother in law, being a full time college student and then having a pretty hard birth and post partum period where my tailbone broke in birth then I had an extremely hard time breast feeding and developed clogged ducts that turned into mastitis and I wasnt producing enough for my baby and had to stop breastfeeding, AND we had to move as soon as my baby was born. I see exactaly how this happened. I went through some sh*t and my brain just shut down. I now have seizure like episodes, crazy flailing movements, severe fatigue, loss of speech, the left side of my body stops working, eyes roll around in my head and alot of other weird symptoms. Sigh, its an unfortunate thing that had to happen.
THANK YOU!!!!! Just saw a MS neurologist and he said it can be probably FND… He is the best to tell me and learn about NFD .. you’re the one who explained me the most about it!!!! It’s about me and about my body and brain!!!! Thank you !!! Now for sure I’ll make an appointment this reason!!!!❤❤❤❤
Thank you so much!!! I have been tested for Lyme, sjogren, lupus, MS, Huntington disease....nope. I have chorea, slurred speech, I have issues swallowing, balance issues, I'm constantly grinding my teeth, I s pace out, peripheral neuropathy, swollen lymphnodes, dystonia...I was hospitalized in March and this neurologist said that I was faking it...I'd choke on water...don't think about it.
Thank you so much! Your video is so informative. After a number of years of balance and mobility issues, and much pushing the medical professionals I received my diagnosis last year (Aus 23). In giving me the diagnose, I was simultaneously given a website address so that I could find out more about the condition..... Whilst relieved at last to be given a diagnosis I felt rather let down at having to do my own research. In time I received the written diagnosis, with recommendations for physio and physcology referrals, both of which have long wait lists. My conclusion at the time was that this is something I have to work at myself. Try as I might to exercise, its not easy as the associated symptoms of fatigue, pain, and low esteem so often takes over. Your explanations have been of great help and enlightenment. Thank you again.
So much insight! I have been to so many doctors over the years. In some cases I've been accused of falsifying symptoms. Tests showed no damage in my brain so I've been told I'm "fine" or "it's just in your head". Yet I suffer very real and debilitating symptoms. I'm not taking this as diagnosis but its given me more data to work with and opened my mind to other rarer possibilities. Thank you thank you thank you so much for your work and research.
There were evidence based treatments for Conversion Disorder many years ago - this involved telling the patient there was no organic problems causing the symptoms which was good and reassuring. Patients were treated by Psychiatrists or Psychologists after acute services ruled out illness of the body. Physical symptoms were helped to lessen by CBT, physio, ot.
I have been recently been diagnosed with FND after being unconscious for 5-6 hours and docs couldn’t find anything. I’ve been through docs and haven’t found a signal thing and have had docs say I was lying about my symptoms.
A highly respected neurologist diagnosed unspecified anemia. He recommended iron supplements and a possible infusion at a later date if the iron levels don’t improve. He said it could be the reason for all my symptoms (ie- Low energy, Hypersomnia, fatigue, brain fog & poor memory.) In the meantime I have been recommended by my regular doctor to a neuropsychologist for brain mapping to help my brain fog. Since being on iron supplements my symptoms have improved except the long sleep time.But, the neuropsychologist Has given the diagnosis of conversion , somotoform & Hypochondriasis after a 15 min appointment ,IQ test & check off lists. He also recommended a check of histamine and cortisol levels. He doesn’t acknowledge the neurologist’s low iron diagnosis because he has misinterpreted the bloodwork.The neuropsychologist recommends a brain mapping and eight sessions of therapy. So, How do I know if the neuropsychologist is correct or if it is a misdiagnosis? And does brain mapping help?
Excellent Video. On one hand, I congratulate you for acknowledging that FND is not a positive disease but a syndrome, namely a somatic response to trauma. On the other hand, (once neurological aetiology is ruled out ) I’m not sure why a person who is having a somatic response to trauma needs years with a panel of highly specialised, (and incredibly expensive ) neurologists, psychologists and medical professionals to gently acknowledge that their symptoms are “real”. Of course they are real, but that is not the issue. The issue is that they are not caused by a brain malfunction but by a trauma response. I feel like some people in the comments here are not making that final connection. They are so exhausted by trying to have the medical profession acknowledge the reality of the symptom, that they have forgotten to look for the reality of the cause. I acknowledge that neurological causes of psychological symptoms are factual, but they are a tiny minority of cases. 95% of people with “FND” are being stigmatised, losing years of their lives, friendships, relationships and income, wandering around between experts and testing labs, experiencing themselves as broken and helpless, when they would be helped by quality empathic psychotherapy to get at the core of things. I appreciate that you acknowledge the historical link with “hysteria”. All of Freud‘s early cases were exactly like this. Namely, incest and childhood sexual abuse victims who manifested with bizarre physiological symptoms “for no reason”. Why can’t we just say this is a trauma response?
I had a father that beat my mother a lot. I have been being tested for MS, for 13years. Never MS. Finally a new neurologist diagnosed me with FND in 2 visits.
I’m wondering too as I was recently given the FND diagnosis but I also have ADHD. I find it very hard to differentiate the difference between unable to concentrate at work because I’m distracted by boredom or other around me. Or I’m foggy due to FND
If you know anything about neural networks, there is a physical manifestation to the neural code! Just because we do not understand the neural code and it would take the resolving level of a two photon microscopes and electrophysiological studies over the brain's connectivity to appreciate it does not mean the physical manifestation does not exist. The current neuropsychologists have developed their shtick, but the term stress needs to be equated to that which taxes the body's resources and not simply that which is recognized for it's excessive emotional valance. Finally, and most importantly, the whole issue involves the need for doctors to discern the underlying foundation of suffering which is often the dehumanization of society, including medicine. It is any doctor's job to take the time to show compassion towards the understanding of each individual's suffering. Society, including medicine, has become so compartmentalized. The assembly line did dehumanize the process of bringing life from human labor, but ask yourself why there are no assembly lines to fixing cars. Our current society does not attend to each human being as individuals and therefore people are experiencing their stress and having to interpret what might be the cause and getting it wrong! And too often doctors are not taking the time either...even neuropsychologists!!!!
I'm not finished with this yet but when you talk about how long a lot of people have to wait to get there a FND diagnosis makes me grateful that I've gotten so soon then? It's only a tentative dignosis but I'm going into my forth month. My symptoms are pretty extreme though I have numbness all over my body and pain going through my nerves My third time to the ER was to a hospital with a neurology department and that's where I got the tentative diagnosis. I see an actual neurologist starting August 31 I can't work or drive so idk how imma pay my bills and I'm really scared, but I can't imagine how much worse it would be over YEARS
I am like you with the numbness I have many other symptoms, I wish you all the best, this is horrific, I cry in pain every day and it's hard for me to imagine anyone else going through this, take care I get you. :)
This video has given me a ton of useful information. I was only recently diagnosed with FND and am beginning the process of learning and treatment. Thank you!
@@theangrytiredzebrado you get FND with hEDS or is it the cause of the neurological conditions? Confused… was just diagnosed with FND but have mast cell, HaT, common variable immunodeficiency, and hEDS.
I knew a lot of info on fnd as i am experiencing it, and done the research but your way of explaining certainly helped. I did share it w/ my sister so she understands it better and she won't question the stuff i'm telling her. Unfortunately in Greece i've only found one neurologist who identified it and helps me out. The first to have contacted years ago (in 2011 was the onset), was so brutal and mean about it: "its not epilepsy, it's pseudoseizures, here get meds and try to live your life", as if I could at that point. Soon I will try to go through disability board for maybe better work conditions though i don't see it happening.. most likely they'll say I need a shrink but i will give it a shot. Thank you anyway.
Really enjoyed this explanation and I’ve had fnd for 5 years and had,child abuse and neglect and had trouble with behaviour and drugs and turned my life around and went back having relationship with my parent/abuser and had a trigger from them,what took me right back to fear and within a few weeks I had a bad car crash and been at home with symptoms ever sence,but not as bad as it once was and although I blamed a car crash for troubles,I’ve came round to childhood trauma the last few years and faced some giants and continue to work on myself and what I’ve been through
Thank you so much for making this video. I have been through everything you said. It really hit hard. I have my 3rd brain MRI next month to rule out MS and they are pointing towards FND. Its really nice to feel validated. I did switch drs because the one only focused on the psychological aspect because I was emotional during my assessment. But I appreciate your advise on what to say to drs in my first appts going forward. Thank you again
Thank you so much! Your video changed my life. I learned I have to forgive myself for having such drastic symptoms with a seemingly wonderful childhood. That is almost enough to completely heal my symptoms!
HOLY SH!T.... DID YOU WRITE THIS ABOUT ME?? I FEEL SO SEEN & VALIDATED. OMG, OMG.. U ARE HEAVEN SENT! This crap started this year after so much C-PTSD that I'm living in EVERY SINGLE DAY!! I had an MRI & EEG & nothing was found. My neurologist told me that I needed to go to PT & to get counseling... specifically CBT because this must be severe stress because I can at times not have symptoms & other times when I'm thinking about my body, like right now, I can't stop jerking around.
@@melodyvoss I’m glad you found it so helpful. I have a podcast on her with an amazing woman Lorraine who models what the beginning of recovery looks like.
Can Covid cause FND? I got Covid and I suddenly had weakness in my arm and lost movements in my hand . Doctor said it's FND. Now I don't use my right arm and that's making things worse ,my arm became rigid like a rock and it doesn't swing when I walk unless I focus on swinging it...is this just in my brain the unability to swing it? And how can improve my arm and hand mobility and reduce the stiffness?
I recently spent several days in the hospital after the sudden onset of symptoms…and discharged with neither any answer nor a neurology referral. Psychiatry only. I was so disappointed and frustrated. I do not yet know the root cause, but my psychiatric provider offered some hope and insight last week. 🤞🏻
A 2020 study from Vagelos College of Physicians and Surgeons at Columbia University Irving Medical Center and NewYork-Presbyterian Hospital demonstrated that excessive oscillations triggered glutamate receptor delta 2 (GluRδ2) insufficiency and synaptic pruning impairment at climbing fiber-to-Purkinje cell synapses in the cerebellum. Those of us who have experienced a TBI and now have tremors may not fully accept this psychological component as the single source. Stress and activities with multiple sensory inputs (like shopping) can feel like a traffic jam in your brain. Then, the signals take a detour, and suddenly you are weaving and shaking.
Oh my God I knew it..... you have no idea how good it feels to hear someone explain EXACTLY what I've been trying to explain to everyone who never believed me.
Same here over 30 35 years I’m only early 40s I knew I was 14:35 broken already 😢
Yes torn from medical trauma from every specialist in your life. Including dentist who doesn’t want to work on my daughter due to FND and too many disabilities
Validation means so much!
@@icareforyourbrainwithdr.su7103I always had a feeling it was due to complex trauma. I could tell my brain was changing but doctors couldn't see it on MRI's. My brain was so damaged from the fear I lived in on a day to day basis, that my body shut down because I was unable to make decisions confidently so I was stuck in freeze response to the point where it paralyzed me. I'm only 26.. I've been this way for a few years now. It's like my body said "I can't do anything wrong if I don't do anything at all."
And my brain has no way of convincing it otherwise... it's so painful when no one believe me...
same
AFTER living with FND for 3 years - this is what I have learned: 1) stress is killing and very bad for FND 2) try to eat whole food, sleep as well as pssible, exercise regularly 3) try not to focus on the symptoms, wear it lightly Sending love to everyone with FND ❤
I am so worn out with professionals asking me, "What is Functional Neurological Disorder" is. This puts me in a position to educate them, while they basically stare at me, in disbelief.
Right? I completely understand. I was diagnosed two years ago and I’ve thankfully had some very well educated doctors and a short diagnosis period, but I have heard so many stories about people with diagnosis horror stories. I usually have to deal with it with teachers, as I’m still in high school. It’s so difficult to get my teachers to understand my disorder and listen to my accommodations, since they are not just physical or cognitive, but also sensory and psychiatric.
💯💯💯💯
Yep, happened to me.. GP looked at me as if I had 3 head as I went through my 18-22 symptoms. I really felt like I was wasting my time after the first two..😞
What are ways you treat this. My daughter just started this salt 28 she’s an occupational therapist and have speech tremors body tremors and tics it’s very sad to watch. Please advise
@@centralfloridasfavoriterea8459 Not doing too much is key, mental and physical exhaustion aggrevates symptoms. This is all new so still trying to figure things out.
I was diagnosed yesterday with FND, which was actually a huge relief - the validation of my symptoms and that it is not early onset dementia (I’m 53, with a strong family history of dementia on both sides). My Neurologist encouraged me to educate myself but I am still in need of a treatment plan. Interestingly, besides having cPTSD, I have hEDS, another poorly understood, diagnosed & treated condition. In the little research I’ve done, I found that there is a correlation of 3 out of every 5 patients with FND also having hEDS. This suggests that the problem pertains to more than a mind & brain, but also has a body wide aspect, possibly pertaining to neurons & connective tissue. I would appreciate a further discussion exploring this.
Thank you for your mind saving channel & podcasts. I’m very grateful for the work you do.
Hi. I was just diagnosed 2 days ago with FND. I've had it bad for the last 10 years. She could have made this video to tell my story because everything in there was one-hundred-percent what I've gone through especially the being misunderstood and mistreated by the medical community. And interestingly I had suspected I had heds and was assessed but she decided I was just off of the spectrum for that but thought there might be something that exists that's just below that. So it's interesting what you're saying about the correlation between the two.
Hello fellow zebra. I fought this diansosis so hard. I don't want this. This is hell 😭😭😭😭
I was diagnosed last week and I also have M.E, hEDS or hyper mobility spectrum disorder. Adhd. I too have to educate myself and have 3 websites to look at but nothing to support me meantime and more worryingly for me due to recent hospitalisations, I have nothing to prove to nhs staff that my condition is something that they need to consider when treating me.. and or leaving me in a wheelchair for 7.5 hrs in A n E with a ‘migrain’
I also was recently diagnosed with FND. I also have hEDS, HaT, common variable immunodeficiency, Mast cell activation. Couldn’t some of these interact or cause neurological problems? Still trying to understand FND.
I have heds the causation.is autism even Dr beard who named it neurosthenia had autism found out after 28 years CFS pot fybromyalgia mine started after a fall just lost my mum to severe ms heds autism my father has ADHD epilepsy and had CFS so
No trauma here, just a burnout. Was misdiagnosed for 3 years, hospital in an out, disbelieve, relationships ended, it's been hell. And I'm one of the "lucky" ones, my FND comes in cycles, in between I feel great but when I get an attack, not so much.
My symptoms come and go
Burnout often means allostatic load has been exceeded over time, and surely so much chronic stress in the body can lead to similar breaking point moments like trauma
I am one of the neuroscience nurse specialists for the Brain and Spine Foundation in the UK. We get calls for emotional support and a need for understanding. Thank you for sharing this valuable information as there is very little support or resources for FND in the community. However things are slowly improving
My friend has just been diagnosed is there any support she can get with recovery ?
@@faebalina7786Unless you live near London, the NHS post code lottery won't be too helpful.
My daughter got diagnosed with it about 15 months ago.
A healthy intelligent girl, who regularly did rock climbing / kayaking etc.
Went to bed one night feeling ill. Next morning could barely walk, and got progressively worse from there
we need more people like you in the usa its even worse over here
@@thebravemurielin UK but not much help decdes pain worst symptom
@@Truerealism747 yea the medical system is broken btw i would like to be freinds with you i share my story on my the brave muriel channel so if you want to get to know me the video to watch is called the life of the brave muriel documentary an fnd battle
Hi. I have been in hospital for two months and been diagnosed with FND. I had a black out and fell down the stairs and was unconcious for 1.45 hours. I have lost use of my right leg and right arm, my arm is now ok. However my leg is not, i am in a wheel chair. I have had every scan going and nothing found. Then i saw a doctor who done one test on me and said i have FND. He asked me about past trauma and took mind of my leg by moving my left one and it moved with it, soon as i try to move it myself by thinking i cant. Watching this video has really helped me and has actually convinced my family i am not making it up. Thank you so much for explaining it in the best way i have heard. I will be watching you alot now. I am Dean Moore from Wales (Tom Jones Country) in the UK
Look up , Brain and Mind at the FND specialists Wellington hospital St Johns wood London.
Practice tai chi every day , seated is ok too
You need somatic movement treatment , Google it. Peter Levine.
Move ,tai chi .
Thank you soo much for sharing this. I've been needing this for 6 years. Everything you said is all soo true. Dr's run all the tests to rule everything else out, then they just call it fibromyalgia or dysfunctional system, and then you're on your own with the unknown, and your life consists of research . I'm soo glad to have subscribed to you and to find this video today.. I wish you were my Dr. Your rhe best.
I also have hEDS, but my trigger is CRPS type II (the presence of nerve damage). My tremors & subsequent myoclonus started 6-8 months after getting CRPS (post bunion surgery & nerve damage from tight cast, which the ER refused to remove due to crushing pain and blue toes). I have also considered that my myoclonus and tremors were caused by antidepressants they gave me as part of my pain med 'cocktail' for CRPS pain since there was a correlation between starting them and the start of those symptoms. First I was told I had "conversion disorder," & I saw 3 psychiatrists which ALL said "NO CD." If it was CD (psych), then I wanted to take care of the psych issue. However, going through CBT, PT, med regimen (total 38 different meds), ketamine infusions, HBOT, and of course therapy, they have not resolved. I think they think it's psych because the sx are intermittent. However, I also have other comorbidities (central sensitization w/ allodynia & hyperesthesia, dysautonomia, POTS, MCAS, arrhythmias, anxiety/depression) from CRPS, which MDs either don't understand or contribute to CRPS....thus, 'it's in your head' &/or 'it's in your brain.' Either way, no one can rule out or diagnose anything and there is no treatment, much less cure. But for CRPS, I would not have these symptoms! My MDs always elude the fact that I have ongoing CRPS. My CRPS is NOT in "remission" and still meets (after 7 yrs) Budapest Criteria! So to be now given a FND (from CD) and thus I DO have a known neurological condition, which is ignored. Dr Sullivan, I am open to your knowledge of patients with CRPS & FND. Thank you.
Would also like to know this. Am suffering with MCAS, HaT, hEDS, and common variable immunodeficiency.
I have most of your diagnosis decades have you been checked for autism.thud us route cause nervous system.goes haywire after any injuries etc causes mcas the hers is part of ADHD autism mine started 1997 at 17 after a fall.
I was diagnosed in 2014 with pseudoseizures, then non-epileptic attack disorder (NEADS) then Functional Neurological Disorder (FND) which is from my understanding, the same diagnosis just with updated terms / names for the condition. Your points from the 8 minute part onwards hit hard. Thank you for your words and the respect you have shown for myself and people like me in such a refreshing way. I've saved this video so I can show those people in my life that can explain me better than I feel I sometimes can.
i hope one day us warriors never have to hear the word pseudoseizures again as it is so stigmatising
Try a Ketogenic diet.
I have just been diagnosed with FND after a SA neck injury. I had the neurologist tell me I am manifesting my symptoms & go to see a psychiatrist & discharged me ! A few days later I couldn’t walk I went to the Physio & she rushed me into the ER. I am in so much pain in my back & hips . They drugged me up & sent me home . It’s been a week I still can’t walk. I got a phone call from the Physio saying the hospital diagnosed me with FND. They never told me ! I am so upset I’ve been left without information & what to do next . I still can’t walk & the pain is excruciating atm. There’s no plan for me the hospital failed me .
Yes the er tend to leave us out of the equation!
What is treatment plan besides therapy to resolve trauma?
Got finally diagnosed after a miserable few years. This video was amazing, I for once am excited about life again!
Two and a half years with FND debilitating symptoms! All tests been normal yet I've not been having a good time. My symptoms started after a neck choke, thank you for this video ❤ keep fighting and pushing x
Same I have just been diagnosed with FND after a neck choke/strangulation & injuries to the back of my neck.You’re the first person I have seen so far that also developed FND from a neck choke. 😢 it’s still fresh , symptoms are very debilitating I haven’t been able to walk in a week it’s scary.
What are your symptoms@@Bella_bellz1111
I cannot say thank you enough for this video! I have just been diagnosed this last month with FND and was left completely confused and with no understanding and just being left with no direction and no real explanation. After speaking with a nurse practitioner for my neurologist I was just told there is nothing to be done. I contacted next my internal medicine doctor as he wanted to see me after the neurology findings. Now I’m told he won’t see me and it is not necessary to see me for another 6 months. I said I thought he wanted a complete neuro work up and they said it was done and now I’m supposed to see him. And she just repeated 6 months. And my family physician doesn’t know what it is. So I’ve started searching online to understand as I was just told from neurology they don’t have anything more for me. Needless to say having seizures, becoming paralyzed, not able to walk, not able to lift my head and having my eyes just close and not open for hours and being told nothing has been terrifying. I cannot tell you how much I appreciate this video. How much I feel like I have a direction and know how to get help and where to go. Thank you so much for this explanation and kindness. I’m beyond grateful. As I’ve been completely lost and confused and have felt I have nowhere to go and have been left wondering what does everyone mean? They are just leaving me like this. So thank you! So much.
Hi Leah, I am so sorry this is happening to you. Please watch my podcast with Lorraine who lives with FND. Her wisdom will help you! Advocate for a health psychologist please who has expertise in FND. Start at psychologytoday.com. Clarity of your diagnosis is an excellent start to healing!
I'm in the UK and my Doctor text me the link to the neurosymptoms website created by Professor Stone.
When I saw the Neurologist in Scotland he said he was very fortunate to actually work with Prof Stone.
Basically though...he couldn't tell me anything I didn't already know. I had already studied fnd, anxiety, chronic pain etc etc....and was in counselling, doing yoga, meditation and generally taking better care of myself. All these things relieved my symptoms.
Was also reinforcing those networks when I noticed issues and did lots of swimming that seemed to completely make my symptoms disappear.
FND is such a complex and frightening condition but I've learned it's important to have faith and trust the process.
Did you ever suffer from the fatigue that comes with Fnd?
My daughter has Fnd, and whilst she's made massive recovery steps, it's now the fatigue which is the real barrier to a more normal life
@stuartburns8657 I had all kinds of weird problems and had short spells of fatigue during my ironman training. The fatigue was due to FND or a traumat related 'freeze' response and was usually only for up to a week. Had several spells of it.
I have less energy than I had before but I can work fine and still do some triathlon training but I've had to cut everything down.
I am recovering a lot and I no longer get those short spells of fatigue and I tend to only have 1 symptom left which is the chronic pain
@@RunPJs Appreciate you finding a moment to respond.
My daughter had a catalog of issues, but with misc CBT / neurophysiology rehab she's 'better'
It's the fatigue that's the really frustrating element for her and us.
She'll be 18 in the summer, and she's barely able to last 4 hours in college (16 hours a week course)
When she gets home, enough energy to eat and she's pretty much straight off in her room to relax / have an early night.
@@RunPJs Hope things work out. We have been looking at a vagus nerve stimulation devices, in the Hope it might help with the tiredness.
Perhaps look at that for the pain?
@stuartburns8657 that's way too young for this awful condition. I'm sorry to hear that!
Yes I've really learned a lot about the ANS and also the limbic system, particularly the amigdula.
My pain started on my tongue 2 years ago at 50, and moved all around my mouth and now has moved to my cheeks.
It's not as bad as it was...what helps is doing everything I can to stimulate my parasympathetic nervous system. Things like meditation, body scan, breathing exercises, swimming gives me 100% relief and yoga etc. That's how I provide myself with ANS stimulation. As well as not working as hard and getting so anxious about stuff. Spending time outdoors is good too.
I hope she recovers...I hope she can find some gentle steps to try to recover 🙏
30 years of CFS and fibromyalgia here. I know you're correct on this.
Thank you Dr Sullivan for you careful attention to your patients. x
As someone with FND, it is wonderful to see that more people are talking about and providing information about Functional Neurological Disorder. Thank you. I think it is so important for people to be able to research and learn as much as they can, especially from informed, fact-based sources. I do worry about some of the content in this video though, and the heavy focus on psychological trauma as being such a major cause of FND. The latest research is very clear that the most common ‘cause’ or trigger of FND is a physical trauma (a car accident, fall, illness etc), and that sometimes there is no clear or known trigger at all. I also question statistics used in this video such as that people who experience childhood trauma are 8x more likely to develop FND. Given the limited knowledge and understanding that even FND experts have about the disorder, I think it is important to give information about the sources used if you are going to provide a number of statistics to prove that current medical research has proven a link between FND and childhood trauma. I also think people with FND or those who are related to them would like to read these studies. There is also some misinformation such as what Positive Symptoms are (being described as physical movements) whereas they are in fact the evidence of symptoms being able to change, reduce or cease momentarily with distraction. Fatigue is also just a very real symptom, not simply a manifestation of medical neglect. I can see how this explanation can be very helpful though, especially if you have experienced emotional trauma and have FND, and it is wonderful to know that FND is being discussed and recognised.
My 16yo daughter (at the time) developed Fnd 14 months ago.
Healthy / intelligent girl. No trauma, no accidents, no injuries.
She was struggling a bit having just started 6th form, but simply went to bed one night a bit earlier than normal, then could walk next day.
Loads of follow on symptoms, random arm spasms, hand griping, tic and tourettes etc.
She's made good progress, but it's the fatigue which is the real life impediment now I fear
My trauma was psychological, see my post above.
Do psychiatrists treat this childhood trauma with medication? To me it sounds like another name for anxiety & repressed trauma. I’m not hearing much that’s not “a mental health struggle.” As a vestibular patient who was not abused, I can’t relate.
I was diagnosed with FND right after my diagnosis for long covid. Here's the order of things that happened: First, I had a bad year anxiety wise bc I went off my meds (I'm all anxiety, not depression). Then a best friend from childhood had a medically assisted death after being diagnosed with stage 4 cancer. Then I got Covid (which was just an upper respiratory "cold" for a week. THEN...the thing that pushed me off the edge...long covid. I got massive vertigo, and was bedridden for a week and a half. When that was over, I got horrible nerve pain in all my limbs (from bicep to fingers and thigh to toes) This nerve pain was strong electric shock sensations, pins and needles, and burning. That drove me nuts and my anxiety sky high. I got put back on anxiety meds, and take Lyrica for the nerve pain which WORKS. 98% of my nerve pain is gone. BUT, when my anxiety gets a little out of control, my nerve pain fires back despite the meds. When I get a handle on my anxiety attack, my nerve pain goes back to being managed. There truly is a brain-body connection. I DID get long covid, but the bad year I had before that mentally definitely left me as a sitting duck for FND.
I have just been diagnosed the other day after years of non epileptic seizures, mostly while i’m sleeping, i had all the epilepsy checks, i got diagnosed with non epileptic seizures. I have a tremor that starts in my right arm, it can get really violent and turn into a full blown seizure, i basically have to hold my arm down when this happens. I have not had a seizure for about a year and half until a few weeks ago, which was disappointing, it all sends me into a very dark place, i absolutely hate having seizures they make me feel like i’m slapping myself when in reality i am not, awful feeling. When they start i feel really paralyzed , start fitting and then pass out, i also suffer with biting the tongue when this happens, i get terrible mouth ulcers and end up not being able to eat at all. i’m only in my 30s. I am glad that people are getting diagnosed instead of doctors/neurologists not knowing how to help people. thank you.
Really glad I’ve found this. I suffered a very traumatic experience some years ago from a waterskiing accident. It left me with partial paralysis for along time. I have extensive sciatic nerve damage and a prolapse disc. My mental health has become quite poor over the years and I’ve developed fibromyalgia, ankylosing spondylitis and arthritis. I’m having days where my body shuts down with fibro symptoms, and my body will literally shake like I’m having a epileptic seizure. I don’t have epilepsy or ms, however my ability to walk properly, my speech is unrecognisable at times, and certain parts of my body will either spasm or I have uncontrollable shaking. I’ve addressed these symptoms to my doctor, which he’s got me to have a CT scan, with no foreseeable cause as to why I have these debilitating symptoms. I’ve noticed when I’ve have periods of stress and high levels of anxiety my functioning of movement is crippling and my mind just shuts down. It feels like I’m experiencing, too much information overload and my brain ceases to function. I need help to walk during these difficult moments and my body feels like it’s not willing to work for me. I was sexually assaulted 13 years ago, and all my symptoms have gotten progressively worse. I haven’t seen a neurologist yet, I’ve only just stumbled across this video, so a lot, if not all of what you’ve just said resonates with how I feel and experiencing. Thank you for sharing this. I’ll be looking into being assessed for FND.
Im so sorry to hear what happened to you . Sounds awful xx
Do you have heds
Omg… thank you for making this video. I was just diagnosed yesterday and I am blown away. I was diagnosed with somatization disorder in the ER when I went which infuriated me. I also have BPD, CPTSD, ADHD, an ED and a lot of physical pain. All of the symptoms started after my concussion in January.
I also got it bad after a fall on my head. Could have caused inflammation and psychological stress sustains that, partially. What helped for me was Q10, linseed oil, and some other things like eye tracking exercises. Cry, or sleep when you have to, that also relieves. Your brain is literally inflamed.
@alysonbye944 hope you are receiving or able to access forms of help and treatment that will assist, and hopefully help recovery overall. Very sorry that you are suffering FND. I have_had a long history with it, and would be open to listening, learning, hearing yours and others experiences and insights, continuing discussion if you ever felt as well. Take care
I was diagnosed 2 weeks ago, and honestly made me feel like I was crazy. I have been telling Dr's and neurologists that some thing is wrong for a few years, and that my tremors, and seizure like symptoms were NOT cause from my normal migraines (had since I was 3). But was told everything from yoir faking knock it off, to are you seeing a counselor, and even given the suicide hot line 🙄 after diagnosis I dropped like a hot plate. I'm now advocating for my self.
Have you looked into Ehlers Danlos syndrome?
Alot of us have autism
@@citlalie9791yeah and not no until decades for me 27 years CFS pots now fybromyalgia diagnosed now heds autism ADHD albeit had to push to get diagnosed.just list my mum to severe ms autism heds my grandfather had simple life had no pain apart from detached retina slipped disc.and Parkinson's at 75 all heds autism caused
@@citlalie9791so true albeit lot of us undiagnosed.after decades if chronic symptoms labeled fnd fybromyalgia CFS pots pelvic pain seams they don't want us to no.sins now diagnosed 13
@@citlalie9791do you have fybromyalgia to
I have had FND for 40 years. This is the best description I have ever heard. I can't thank you enough for making this video. I will check out your podcast right now. Thanks again
I thought my fnd was with a car crash,but always been on the end of narcissistic abuse and 45 now,so been a difficult few years facing both and hopefully more education and help,will keep coming
THANK YOU! An exceptionally clear, comprehensive, and yet concise, explanation of FND - a little understood and therefore elusive of diagnosis condition. In months of investigation to "label" my symptoms,, this is the best snapshot of FND I have encountered: bravo!
Thank you for this video. It is rare to come across well informed, experienced and compassionate concise information regarding FND. I first suffered FND, conversion disorder when I was 16. Severe jerking, tremors through head and left limbs. The initial 'bout' lasted almost 2 years until the movements simmered down gradually over that time period...from jerking to tremor to no movement. I had 4 'relapses' over an 8 year period in which the severe jerking returned, and would last anywhere between 6 to 10months. 21 odd years later I have had to confront a lot regarding my childhood and lifetime of mental health disorders. Currently diagnosed with CPTSD (im a victim of reptitive sexual abuse, grooming, normalised, incest from ages 5 to 15), MDD, ADHD, chronic pain and others. I still suffer from physical symptoms that I experienced during more severe periods of FND, e.g. muscle weakness, feeling loss or detatched from limbs, slight tremors...however I have no idea how much other variables such as my various disorders, mental health issues, living circumstances, development, stress etc compund on these FND like symptoms. I am not sure if the FND still persists after all these decades but manifests differently?
Anyway thank you again for this video. Solidarity and sorry for anyone suffering or who has suffered FND. Hope there is more FND education, awareness, research, treatment etc in time
As someone with FND, this video is very accurate & helpful... I use it to explain FND to those around me and understand it myself more..
Sooo interesting. Especially the distraction part. Similar to when people with Parkinson’s become frozen when walking….and counting out loud helps some to start moving. The brain is amazing
Thank you so much i was diagnosed in july i spent 19 days in the hospital thought i was dying i end up being bed bound . Hospitals is a trigger of mine so being there was making me worse worse they ruled out everything else and said i have conversion disorder from too uch anxiety taking over my body . I was angry lol because to me it sounded like its all in your head. I decided to find videos so i can understand what is happening to me found you so thank you for caring. Been in therapy a long time for cptsd so i can see it make sense but its terrifying.
The saddest thing is that FND is more accepted in the UK than in the USA and there is really no care here or insurance doesn't cover it.
It may be diagnosed more but it's not accepted really and there's a great deal of ignorance of it within the medical system. There's no treatment or care here either.
Your information was REALLY helpful for me. My 79-year-old husband began to have these issues (pins and needles and neuropathy in toes and feet) about 15 years ago. The doctors did not know any causes of his symptoms or could not give a diagnosis. (One doctor who did a nerve test suspected Charcot Marie Tooth Disease but she retired soon after.) He does have extreme fatigue, cognitive complaints, sleep disterbances, pain, numb and detached Yes, he struggles with emotions and I never understand why. He has never discussed any trauma (except the fact that he grew up in a very wealthy town and his high school classmates had everything and he was the last of four children of a middle class Italian family. His older brother tells me that "he" had a magical childhood and he is very grateful for his upbringing so it hard to know why my husband feels deprived by his childhood. His neurologist tells him this..."There is no treatment and no cure. See you in six months."
I'm so glad it was helpful.
Deep thanks , along with being post stroke, cerebrovascular disease and fibromyalgia, now diagnosed with FND too. As an ex psychiatric nurse am finding all this interesting ❤
The amount of times I was told I was just on drugs and drug seeking. The amount of times my family and friends had to argue with drs about my non existent drug abuse. The amount of exasperated scripts written and shoved at to just leave, that I’ve never even filled. I can deal with damned pain. I can’t deal with the system that dismisses me.
I understand. Neurologists seem particularly lacking in the maxim of "first do no harm"
100% agree with everything you have said! I too have been diagnosed with FND and knowing me as well as I do mine has been brought on by numerous traumas and I know my triggers. I have a Pain Management Team and they were blown away with my understanding of the pain I suffer on a daily basis. Two years ago suffering my last traumatic event I was diagnosed with an auto immune disease; Type 1 Diabetes at the age of 55, no history in family. You have just confirmed my personal thoughts including the realities of my symptoms. Thank you so much! Yours from England x
I am so pleased it was helpful!
What I've come to realise is that it's the chronic fatigue that comes with Fnd is the real impediment to a more normal life.
Many / most do eventually learn of manage their symptoms, but the fatigue means they can typically only do a quarter of their former normal activities.
They can push it beyond that, but it leads to a boom and bust cycle
I currently have being diagnosed with fnd, but i have no trauma in my childhood, yet i have lost the ability to speak fully, i can't pronounce words or make sentences, yet they can't give answers, it seems a cheap diagnosis and don't understand why suddenly i have lost the ability to talk
It's only valid if a comprehensive work up has been done.
@@icareforyourbrainwithdr.su7103 i have seen one neurologist and waiting to see a specialist fnd neurologist in the next few months, but my childhood was loving and caring, nothing that would be remotely classed as traumatic, the fact they lead down the path of trauma is a easy route to send you down, as they fully don't understand why, i have suddenly lost the ability to communicate, thank you for your response
@@throbbinhood7867 It can be other triggers rather than psychological trauma. Medical issues, financial stress. Think about the way I describe factors in the podcast and how that may map on. I hope you find th answers and support you deserve.
Dr. Sullivan I am so glad I found your channel I was diagnosed with FND 4 days ago. The neurologist gave me a handout with one page that described FND and another page that had three websites. She then proceeded to tell me that FND is quite common and for me to find a physical therapist that is familiar with FND. She then told me to find a CBT specialist from the website psychology today. She also told me that it would be difficult to find these people. I’m feeling so overwhelmed with this task because none of the therapist on the Website have CBT listed per se. I asked her for referrals and she I guess is unable to give me any referrals. I am on my own i am 75 years old and the dizziness, brain fog and tremor are driving me bonkers. I am sleeping so much now it is just crazy. In a way I’m grateful that I sleep so much because then I don’t have to deal with fibromyalgia, pain or this tremor. But this is not living! I see that you practice in North Carolina which is where I am living (Hillsborough). Would there be any chance you could guide me in the right direction?
I recommend Heather Tippens! www.htippens.com/
Dr Sullivan, thank you for this video. You mentioned bad drug reactions. Have you seen medication withdrawal (long term SSRI use) turn into FND? I've been diagnosed with PPPD. Do you consider this an FND? I have had it for 14 months after attempting to get off. It was a very stressful time in my life. I have seen 6 psychiatrists and 4 neurologists. FND has been mentioned. Is there a way to distinguish between a pharmaceutical injury and FND? All my vestiblar testing is normal and I'm disabled by this at 33 years old.
Thank you
Distracting...like tinnitus. I hope research finds a way to fix this upsetting condition too.
It's actually FND, (part of chronic pain spectrum of symptoms). Researchers are just tying the knots on this one.
Dr Sullivan, I am open to your knowledge of patients with CRPS & FND. Thank you.
I was diagnosed a week and a half ago. my symptoms are already reduced. my doctor was very validating and compassionate thank God . now for treatment. only one or two in the entire area that treat.
Thank you for this video!! I went into the hospital 2 years ago with Covid Pnemonia. During my time I was intubated, my heart stopped, and was in Icu. 2 years later I still have left hand tremors, weakness in my left leg and walk assisted with a walker. And.. developed seizure disorder following treatment. While I know that's a lot, it happened after my husband had been diagnosed with stage 4 lung cancer with mets to his brain. So there was trauma before I got sick with Covid. Just knowing a name for what I think I have been dealing with gives me hope!
Always so insightful and presented with such warmth. I have ET and CD. Have had ET as long as I can remember and CD developed about 8 years ago - I'm 52. Tried botox for the CD and got a VERY sore neck. No meds work, tried Propranolol (20-90mg per day and Primidone (helped a little but was so wasted I couldn't function) . Am a bit over it all but your info inspires me to look deeper and elsewhere for relief. Thank you Dr Karen for all that you do. So grateful.
Thank you sooooo much for this video. I had my first experience after receiving Covid vaccine. I been DX with FND and had an unpleasant experience in the health system, so I'm learning how to heal and deal with this on my own. It effects my family and myself but I've been able to improve but have symptoms here and there. After 2 years I'm still confused on what is going on with my mind and body. Thank you for researching and bring awareness to FND.
Tremor started after covid vaccine
Thank you Sarah. I totally agree with you. I was diagnosed with FND 1 year ago...
I'm stuck in between the neurologist and psychiatrist, with a PhD therapist's opinion seemingly that I have FND. Or in my case, FMD, as dystonia is my primary neurological symptom. There is not a lot of info on FMD. It seems that with dystonia patients the functional label is perhaps overlooked, or, is much less of a possibility. So I am only just now finding the larger group of FND.
It's becoming clear to me that my therapist has communicated to both specialists, and perhaps my PCP, that this is her evaluation. I think this because I am being told the same reasoning and explanations she tells me, that I have seen "so many doctors" and "none of them can find anything wrong." I do not at all discount FND as one of several causes of my symptoms, all yet tbd. I am pretty knowledgeable about theories and interested in the mind-brain-body-soul connection. I have been patiently listening to what she has been inferring: that I not only have FND, but also Somatic Symptom Disorder.
But I don't see how a single health care professional, even if she is a PhD, should make a decision like this unless that have reviewed your medical history AND in conjunction with medical doctors. This therapist knows little of my overall health history or symptoms. She does not seen to be familiar with types of MDs such as Miege. She sent me to be tested for autism and I was diagnosed with ADHD and cPTSD. She got the results last summer but seemed surprised when I mentioned it recently, and asked me what the c meant. It's clear she doesn't have the whole picture, so how can she decide there are no medical/physical/structural reasons for my symptoms?
The worst part is, I really like her. I have a terrible tendency, especially as I have been getting more ill, to be overly trusting of people who I think can help me. But I am realizing that perhaps she has not been helping me at all. I discussed this with my psychiatrist and he suggested I ask her to review my medical records, and to discuss with me why she thinks I have seen "so many" doctors, etc. The original neuro is putting me off, it feels. It is a small professional community and I am sure no one wants to disagree. But I feel more and more judged, and this has been going on for over a year. I'm not really even sure what has been accomplished. I'm being told to change my career to something less stressful, not keep chasing doctors, take various psych meds that will desensitize my body, and accept that my symptoms are a result of changes to my brain due to stress. and anxiety. That's about it.
Unrelated to the therapist, I see pain management for botox/dystonia and steroids/cervical arthritis and those have helped greatly. I have had little benefit from psych or physical therapy, both of which I was doing prior to the onset of the dystonia. I'm told by some that botox won't help FMD, and therapy won't help the neurological disorder, so maybe FMD isn't even a correct diagnosis.
I just want to do all I can to feel better and get some bits of my life back. I will continue to watch the rest of your videos now that I have found you. Thank you.
Thank you for such a detailed presentation.
Omg I feel so seen. I want to see this doctor in person.
I think I have this. I am normal most of the time, but if I get stressed or angry or upset I can become paralysed for a short time and if I am going through a lot of anxiety I can go through days where it is hard to walk and get about.
I keep getting told my collapses and periods of unresponsiveness are avoidance behaviours, which I hear as it being told that I'm putting it on, even though it isn't meant that way.
I have a friend who has been tested for epilepsy 4 times because of having seizures and each time it has been confirmed that there is no epilepsy.
I was just released from hospital after cat scans, an MRI and speech therapist confirmed as "not a stroke". I explained to the first response while going through the in and out series of spasms as best I could its not T.I.A. but they all looked at each and asked the question, what is F.N.D? I'm about to give up my job due to F.N.D and Fibromyalgia 😢 and it scares me coz you feel alone as all vitals and brain scans are normal which makes me look like I'm faking but I am so exhausted 😔
This has been the absolute best in explaining so much in such a short time. I just want to say thank you from all of us suffering thatnk you so so much ❤️
I really appreciate you taking the time to say that! Please help me spread the word and share this video on your social media.
WOW! Thank you for putting this out! I had been in and out of doctor's offices, for 6+ years. Soon, I was gaslit, every time, I'd walk into a doctor's office, they already had formed an opinion. In 2017 a young doctor seemed to actually care about what I was saying, she then gave me a PTSD diagnosis. Well...........needless to say, I got very angry with the diagnosis, left went home and told my husband, he was like finally, that makes a lot of sense. I didn't get it however, I mean I was never in the military, I just didn't understand the diagnosis. Over the 6+ years, I started to show symptoms of not being able to talk mid sentence. I was totally cognizant of my surroundings, I just couldn't talk, the words wouldn't come. This lasts anywhere from 20 seconds to over a minuet. Then, when I do finally speak, it's with a very bad studder or repeating the word I was left at over and over again. In 2021 I was sent to a Neurologist, he asked me some questions, and once again PTSD was the diagnosis. My vision by this time would be wonky, blurry, double vision, my gait was way off. Especially on the right side. Many doctors have just shined me on. Finally, in Sept. of 2022, I woke up one morning and it seemed as if I was in a dimly lit room. I kept repeating in my mind the same thing over and over again. I walked out of my bedroom and my daughter was like mom, are you ok. I remember going back to my bed, the next thing I knew, there was a room full of paramedic people in my room. I was having a type of grand maul seizures. They thought I was having a stroke. I couldn't talk, I shuddered so badly they couldn't understand me. I couldn't understand me. Next thing I remember I'm in an ambulance, headed to the hospital. I must have had 7-9 grand seizures. FINALLY, a doctor came to see me. He was a neurologist and had come to Central Oregon, where I live from the NE, Maine area. My seizure's started to subside, he asked me questions and gave me tests for well over an hour and a half. He was so kind and said, "I believe you have what is call FND". He went on to explain it, said it wasn't well known in the states yet, and gave me a website to visit tat was based in the UK. I couldn't believe it, when I went to the web site, it was like reading my life's story. I've been able to use tools to see, the symptoms, when an attack is going to take place etc. I have good days and better days, but every day is a coping day with this. I recently fractured my calf and on the way to hospital, as soon as we got there, I had a huge seizure. I had to try and explain to the staff what was going on. They didn't want to listen and kept insisting I fell and hit my head or something. I was like I DIDN'T FALL!!! I am so very thankful you put this video out, thank you.
I have been diagnosed with FND been suffering for the past 3/4 years. My left hand side is not working well and walking is not so great. All I can say is keep going I'm in the UK and the waiting lists are very long! So thanks for sharing I'm on a mission to get my body back it's been alien to me for too long
Hi, and thank you for this amazing eye opening video. My experience with FND has started right before I gave birth to my daughter, 2 years ago, staring with blurry vision, trouble using the toilet, NHS blamed it on birth calling is 'one of those things' (?!), c9ndltinuing with what it looked like 2 ministrokes, 1 seizure, loss of control of my lower body, bladder and bowel, sudden swelling of the face, fatigue, not being able to focus or understand even the simplest conversation, eye lid going droopy etc. As I'm writing this comment, I have yet again brurred vision, like after looking right into the sun. I have had a head MRI 2 years ago, it came back normal, a CT scan about the same time, came back normal, a spine MRI about a year ago, came back normal, eye clinic scanned me and said it's all normal. So everything seems fine, yet i get flare ups of various weird things happening to me. It all makes swnce now, after finding out about FND. I need help and I don't know where to start. I was watching your video in tears. Hopefully I'll be able to dot the i regarding my medical condition.
Sorry if I made any mistake, I can't see very well what I'm writing.
As long as doctors don't even know what FND even is you cannot treat it. 2nd is the lack of medication and emp technology that I know does work and should be covered by medical insurance.
This is so refreshing to see a medical professional validate FND. Thank you! I was diagnosed over a year ago and have a multitude of symptoms. I did get a second opinion today and he thinks it is FND as well. He is ordering a brain MRI, lumbar puncture, and blood tests to rule anything else out. Was wondering if you take tele-med patients? I'm looking for treatment and it's definitely hard to find with FND. Thanks! :)
Thank you Doctor. I was finally diagnosed with FND in 2019. I can't work, though I keep trying to, due to the cognitive effects. Memory is a real problem as is manipulating aural and read data in my mind.
I started having issues right after getting my first jab of PZ in 2021 my symptoms kept progressing over the next year and until they came to a head and left me bed ridden for months. 8 months later I finally had a diagnosis.
I was diagnosed with FND last year. What happened to me I will be going to a doctor's appointment for an injection or go to the hospital for surgery. I have only had two events. The first event I had shot like normal in my lower back I was fine got up and started talking drunk and couldn't walk I was put back on the bed ran got the doctor and kept saying I don't know what is wrong and my body became paralyzed from the head to my feet and could not speak or move. But I could hear and see and understand everything. They told me might be having a stroke and called 911. I stayed one night with no answer and took almost 7-9 hours to talk and move again. But the entire time I was treated with horrible treatment. I could not say or do anything.
Hi, I have been listening to you for several years now. You have helped me alot. But some times I forgot what I learned. I don't have anyone helping me with my brain problems. Sometimes I think I am not real. I am getting so depressed and sad. My dad died who I lived with. We helped each other with our crazy brains.😢
You do not know me, but I just wanted to say I'm thinking of you and your struggle. Coming and reading these comments resonates so much with my experience. As hard as it is know that there is a community here that understands, even if Drs don't. Stay strong and good luck
Please stay positive and avoid isolation.Find out what is available in your area by way of support groups for those with neuropsychological disorders.And ofcourse try to do physio , any activities that you need support with get them if you can .I don’t know what country you are in and what support is available but I know anxiety and stress make symptoms worse.
I have been diagnosed with FND, I am in Canada, and don’t even have a family doctor. I have had horrible experiences with doctors since I was a young teen. I don’t know where to get help. And my FND is ruining my life.
We need to speak about nutrition..healing gut..lover inflammation..
was diagnosed today. I was put into shielding in 2020, but still ended up with Covid. I was hospitalised with it as well as Pneumonia. I then got a blood clot in my lung.
I have never made a full recovery and have Long Covid.
It was initially thought I may have dementia. I think the Covid and Long Covid link is interesting
No support at all here in the UK for FND patients. I have been diagnosed two months ago after one year and a half of running from doctor to doctor...doctor gave me the diagnosis and a sheet of paper with some websites to visit...and that's all.. no treatment plan nothing ! We can't find any help here in the UK
Hi there, I am working with an online provider who does somatic therapy. This stuff works! I'll be posting her information soon.
I have yet to find a neuropsychologist who provides treatment. Ever. They seem to believe their role is diagnosis. I have FND. They have not provided recommendations to my PT, whom I had to explain what FND is. I provided her with research, etc and of course, documentation of my diagnosis. She is in her early 30s and had never heard of it. She has a Doctorate. I am a retired, LCSW.
I was so confused whenI was taken to Barnes Jewish hospital and had a tremor in triage was rushed back to a room one doctor asked me what was happening and I said I have FND it was scary when two of the doctors look at each other and shug there shoulders and Ardmore confused than me like I told them this hospital gave me the diagnosis!! How can I feel safe here if you I t even know what it is y’all diagnosed me with!!
My daughter was diagnosed with FND 2 years ago. She is unable to walk & lost control of her bladder functioning. After seeing my daughter wasting away, the neurologist who diagnosed her thought there might be more going on. He ran all sorts of tests, but all have come back normal. He sent her to a genetics doctor & he said FND. We aren't sure what to think at this point. We are on our own. It's extremely frustrating.
Thank you Dr Sullivan. Can you please tell me what to do when your neuropsychologist is the number one person who does NOT believe you. Just because I am still working in the pharmacy, he thinks that I am making things up and exaggerating. He invalidated my neuropsychological test, sent a report to my neurologist who I see for migraine, in which she sent me to my primary care without seeing me. You are the very 1st person who I have heard talking about such thing, FND. I have been battling this for years, symptoms are getting worse. I do know it's not in my head, and you just validated it. Can you please give me any suggestion. I am hitting a wall again.
Thank you for this video. I have an autoimmune disease (Sjögrens) AND a dissociative disorder. I have had neurological symptoms for 9 years, but I am stuck with getting a diagnosis for this because no type of doctor seems to be responsible for it.
I just started listening to the Lorraine podcast, I can't stop crying 😭
I found my people 😭❤️
I have FND, had significant child abuse and grew up in an unstable home and my dad left me as a young child. I had very severe anxiety attacks that started after my childhood dog died and then right prior to the FND developing, I went through a very horrific period of being pregnant and tormented by my evil mother in law, being a full time college student and then having a pretty hard birth and post partum period where my tailbone broke in birth then I had an extremely hard time breast feeding and developed clogged ducts that turned into mastitis and I wasnt producing enough for my baby and had to stop breastfeeding, AND we had to move as soon as my baby was born. I see exactaly how this happened. I went through some sh*t and my brain just shut down. I now have seizure like episodes, crazy flailing movements, severe fatigue, loss of speech, the left side of my body stops working, eyes roll around in my head and alot of other weird symptoms. Sigh, its an unfortunate thing that had to happen.
THANK YOU!!!!! Just saw a MS neurologist and he said it can be probably FND… He is the best to tell me and learn about NFD .. you’re the one who explained me the most about it!!!! It’s about me and about my body and brain!!!! Thank you !!! Now for sure I’ll make an appointment this reason!!!!❤❤❤❤
Thank you so much!!! I have been tested for Lyme, sjogren, lupus, MS, Huntington disease....nope. I have chorea, slurred speech, I have issues swallowing, balance issues, I'm constantly grinding my teeth, I s pace out, peripheral neuropathy, swollen lymphnodes, dystonia...I was hospitalized in March and this neurologist said that I was faking it...I'd choke on water...don't think about it.
Thank you so much! Your video is so informative. After a number of years of balance and mobility issues, and much pushing the medical professionals I received my diagnosis last year (Aus 23). In giving me the diagnose, I was simultaneously given a website address so that I could find out more about the condition..... Whilst relieved at last to be given a diagnosis I felt rather let down at having to do my own research. In time I received the written diagnosis, with recommendations for physio and physcology referrals, both of which have long wait lists. My conclusion at the time was that this is something I have to work at myself.
Try as I might to exercise, its not easy as the associated symptoms of fatigue, pain, and low esteem so often takes over.
Your explanations have been of great help and enlightenment. Thank you again.
You are so welcome!
So much insight! I have been to so many doctors over the years. In some cases I've been accused of falsifying symptoms. Tests showed no damage in my brain so I've been told I'm "fine" or "it's just in your head". Yet I suffer very real and debilitating symptoms.
I'm not taking this as diagnosis but its given me more data to work with and opened my mind to other rarer possibilities.
Thank you thank you thank you so much for your work and research.
There were evidence based treatments for Conversion Disorder many years ago - this involved telling the patient there was no organic problems causing the symptoms which was good and reassuring. Patients were treated by Psychiatrists or Psychologists after acute services ruled out illness of the body. Physical symptoms were helped to lessen by CBT, physio, ot.
I have been recently been diagnosed with FND after being unconscious for 5-6 hours and docs couldn’t find anything. I’ve been through docs and haven’t found a signal thing and have had docs say I was lying about my symptoms.
A highly respected neurologist diagnosed unspecified anemia. He recommended iron supplements and a possible infusion at a later date if the iron levels don’t improve. He said it could be the reason for all my symptoms (ie- Low energy, Hypersomnia, fatigue, brain fog & poor memory.) In the meantime I have been recommended by my regular doctor to a neuropsychologist for brain mapping to help my brain fog.
Since being on iron supplements my symptoms have improved except the long sleep time.But, the neuropsychologist Has given the diagnosis of conversion , somotoform & Hypochondriasis after a 15 min appointment ,IQ test & check off lists. He also recommended a check of histamine and cortisol levels. He doesn’t acknowledge the neurologist’s low iron diagnosis because he has misinterpreted the bloodwork.The neuropsychologist recommends a brain mapping and eight sessions of therapy. So, How do I know if the neuropsychologist is correct or if it is a misdiagnosis? And does brain mapping help?
Wow! What are you going to do?
Yes brain maping helps the doc understand what meds or supplements you will need
Excellent Video. On one hand, I congratulate you for acknowledging that FND is not a positive disease but a syndrome, namely a somatic response to trauma. On the other hand, (once neurological aetiology is ruled out ) I’m not sure why a person who is having a somatic response to trauma needs years with a panel of highly specialised, (and incredibly expensive ) neurologists, psychologists and medical professionals to gently acknowledge that their symptoms are “real”. Of course they are real, but that is not the issue. The issue is that they are not caused by a brain malfunction but by a trauma response. I feel like some people in the comments here are not making that final connection. They are so exhausted by trying to have the medical profession acknowledge the reality of the symptom, that they have forgotten to look for the reality of the cause.
I acknowledge that neurological causes of psychological symptoms are factual, but they are a tiny minority of cases. 95% of people with “FND” are being stigmatised, losing years of their lives, friendships, relationships and income, wandering around between experts and testing labs, experiencing themselves as broken and helpless, when they would be helped by quality empathic psychotherapy to get at the core of things. I appreciate that you acknowledge the historical link with “hysteria”. All of Freud‘s early cases were exactly like this. Namely, incest and childhood sexual abuse victims who manifested with bizarre physiological symptoms “for no reason”. Why can’t we just say this is a trauma response?
I had a father that beat my mother a lot. I have been being tested for MS, for 13years. Never MS. Finally a new neurologist diagnosed me with FND in 2 visits.
So what about when it's paired with ASD and ADHD
I’m wondering too as I was recently given the FND diagnosis but I also have ADHD. I find it very hard to differentiate the difference between unable to concentrate at work because I’m distracted by boredom or other around me. Or I’m foggy due to FND
@@rasberryiceifyI have this to do you have heds to check out Dr lenz he specialises in ADHD autism causation
@@rasberryiceifySame here!
If you know anything about neural networks, there is a physical manifestation to the neural code! Just because we do not understand the neural code and it would take the resolving level of a two photon microscopes and electrophysiological studies over the brain's connectivity to appreciate it does not mean the physical manifestation does not exist. The current neuropsychologists have developed their shtick, but the term stress needs to be equated to that which taxes the body's resources and not simply that which is recognized for it's excessive emotional valance. Finally, and most importantly, the whole issue involves the need for doctors to discern the underlying foundation of suffering which is often the dehumanization of society, including medicine. It is any doctor's job to take the time to show compassion towards the understanding of each individual's suffering. Society, including medicine, has become so compartmentalized. The assembly line did dehumanize the process of bringing life from human labor, but ask yourself why there are no assembly lines to fixing cars. Our current society does not attend to each human being as individuals and therefore people are experiencing their stress and having to interpret what might be the cause and getting it wrong! And too often doctors are not taking the time either...even neuropsychologists!!!!
I'm not finished with this yet but when you talk about how long a lot of people have to wait to get there a FND diagnosis makes me grateful that I've gotten so soon then?
It's only a tentative dignosis but I'm going into my forth month.
My symptoms are pretty extreme though I have numbness all over my body and pain going through my nerves
My third time to the ER was to a hospital with a neurology department and that's where I got the tentative diagnosis.
I see an actual neurologist starting August 31
I can't work or drive so idk how imma pay my bills and I'm really scared, but I can't imagine how much worse it would be over YEARS
I am like you with the numbness I have many other symptoms, I wish you all the best, this is horrific, I cry in pain every day and it's hard for me to imagine anyone else going through this, take care I get you. :)
This video has given me a ton of useful information. I was only recently diagnosed with FND and am beginning the process of learning and treatment. Thank you!
My adult daughter was diagnosed with FND a few years ago by a Neurologist. She was not neglected nor abused in any way. I'm flabbergasted by this!!!!!
Look into Ehlers Danlos Syndrome please
@theangrytiredzebra I suggested that 13 years ago she was told she didn't have ED by Paediatrician. That was 11 years before the FND diagnosis
She could be autistic or have adhd she was just born that way
@@theangrytiredzebrado you get FND with hEDS or is it the cause of the neurological conditions? Confused… was just diagnosed with FND but have mast cell, HaT, common variable immunodeficiency, and hEDS.
All my life I’ve been dismissed by doctors so it’s a relief to know this
I knew a lot of info on fnd as i am experiencing it, and done the research but your way of explaining certainly helped. I did share it w/ my sister so she understands it better and she won't question the stuff i'm telling her. Unfortunately in Greece i've only found one neurologist who identified it and helps me out. The first to have contacted years ago (in 2011 was the onset), was so brutal and mean about it: "its not epilepsy, it's pseudoseizures, here get meds and try to live your life", as if I could at that point. Soon I will try to go through disability board for maybe better work conditions though i don't see it happening.. most likely they'll say I need a shrink but i will give it a shot. Thank you anyway.
Really enjoyed this explanation and I’ve had fnd for 5 years and had,child abuse and neglect and had trouble with behaviour and drugs and turned my life around and went back having relationship with my parent/abuser and had a trigger from them,what took me right back to fear and within a few weeks I had a bad car crash and been at home with symptoms ever sence,but not as bad as it once was and although I blamed a car crash for troubles,I’ve came round to childhood trauma the last few years and faced some giants and continue to work on myself and what I’ve been through
May all the blessings be with you, Malcolm.
Thank you so much for making this video. I have been through everything you said. It really hit hard. I have my 3rd brain MRI next month to rule out MS and they are pointing towards FND. Its really nice to feel validated. I did switch drs because the one only focused on the psychological aspect because I was emotional during my assessment. But I appreciate your advise on what to say to drs in my first appts going forward. Thank you again
Also there is a high rate of ME/CFS and FND. Research has come out due to a leaky blood brain barrier causing memory issues and brain fog
Thank you so much! Your video changed my life. I learned I have to forgive myself for having such drastic symptoms with a seemingly wonderful childhood. That is almost enough to completely heal my symptoms!
Kerri, your message truly makes my day. Thank you for sharing. Education is so powerful!
HOLY SH!T.... DID YOU WRITE THIS ABOUT ME?? I FEEL SO SEEN & VALIDATED. OMG, OMG.. U ARE HEAVEN SENT! This crap started this year after so much C-PTSD that I'm living in EVERY SINGLE DAY!! I had an MRI & EEG & nothing was found. My neurologist told me that I needed to go to PT & to get counseling... specifically CBT because this must be severe stress because I can at times not have symptoms & other times when I'm thinking about my body, like right now, I can't stop jerking around.
@@melodyvoss I’m glad you found it so helpful. I have a podcast on her with an amazing woman Lorraine who models what the beginning of recovery looks like.
How come, if it's hysteria, so many people get exactly the same symptoms?
Can this diagnosis be accurately given within 15 minutes with no imaging or other tests beyond reflexes and a tuning fork?
I got the diagnosis as an exclusion diagnosis and got told by so many DOCTORS that I was faking even with the diagnosis :(
Can Covid cause FND? I got Covid and I suddenly had weakness in my arm and lost movements in my hand . Doctor said it's FND. Now I don't use my right arm and that's making things worse ,my arm became rigid like a rock and it doesn't swing when I walk unless I focus on swinging it...is this just in my brain the unability to swing it? And how can improve my arm and hand mobility and reduce the stiffness?
I recently spent several days in the hospital after the sudden onset of symptoms…and discharged with neither any answer nor a neurology referral. Psychiatry only. I was so disappointed and frustrated.
I do not yet know the root cause, but my psychiatric provider offered some hope and insight last week. 🤞🏻
A 2020 study from Vagelos College of Physicians and Surgeons at Columbia University Irving Medical Center and NewYork-Presbyterian Hospital demonstrated that excessive oscillations triggered glutamate receptor delta 2 (GluRδ2) insufficiency and synaptic pruning impairment at climbing fiber-to-Purkinje cell synapses in the cerebellum. Those of us who have experienced a TBI and now have tremors may not fully accept this psychological component as the single source. Stress and activities with multiple sensory inputs (like shopping) can feel like a traffic jam in your brain. Then, the signals take a detour, and suddenly you are weaving and shaking.
I was dx with FND over 13 years ago (51 now) and have never been abused ever in my entire life. So sick of hearing that it's caused by childhood abuse
Have you looked into Ehlers Danlos Syndrome?
What you thinking ? I had HypermobileEhlersDanlos o.o are they inter connected you reckon @theangrytiredzebra
I have also suffered from nightmares and night terrors since i can remember
Patients with parents that are ill... Could this be hypermobile Ehlers Danlos Syndrome as this causes loads and loads of illnesses and is gentic...
There is no genetic testing for hEDS ( the hyper mobile type) they say it’s genetic but I’m not convinced