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Thank you 👍

Thank you 👍

Thank you 👍

Thank you 👍

Thank you 👍

Thank you 👍

I was just piano with FND

Hi Chris. Despite being a long termer (24 years now, same age as you at the start), I still recall all my drop attacks and other issues. As I mentioned on a previous video of yours my best cope is making my brain giggle, especially when an ambulance crew are shouting at me to check for conciousness. Pardon my Klatchian, but that bloody hurts! Hearing is hyper sensitive during an event. I hope that there will be more advanced research and perhaps some effective treatment long before you get to my age. The best I can do for now is say to all in this boat, "don't push yourself, do what you can manage and keep a giggle in your brain, even if it won't reach your face". "

Currently 63. Symptoms for 24 years. Almost got used to the issues, ha ha. Can no longer walk, drive or ride my motorbike, having to use an electric wheelchair because my right side is almost useless. Having increasing speech and right eye problems. The feeling of frustration bordering on guilt for being unable to work for me was the hardest part of trying to cope. Unfortunately, due to the time it took to get a diagnosis (18 years) I've been told there is no treatment beyond my own coping stategies. The best one is make your brain giggle during an event (specially a drop attack). But the migraines are only occasional now (4 in a good year).

I explain the word/speech disconnect as a word train derailment. Other people can picture that in their own heads more easily than anything else I've tried. "Visualise" was the word I was struggling for. Edit to add the final phrase.

yes same exact

Yes exactly its so difficult to deal with this! I have a bad back but most say mild to moderate bulge and they can't see the foot drop numbness and tingling coming much from that but i just don't know. i just wanted to let you know your not alone we will get through this one day and people will understand our struggle better

I got very similiar symptoms from a entirely different disorder, it is quite interesting how so many conditions have overlapping symptoms

“We just want our old life back”….100% how I feel. All the tests but no treatment or hope.

I totally agree, the good days when we feel good enough to do stuff or even a long walk (at least for us) we pay for it. One thing I was wondering and to be honest I am not sure if you have already said in past videos (if so I apologize) Have you ever been checked for Lyme Disease and all co infections as well? It is noted that there is a tie between Lyme disease, MS and they have Eve as well FND. I started this journey with Last stage Lyme, Neuro Lyme, Rocky Mountain Fever, and many other diseases . In 2021 it was diagnosed. 2024 Diagnosed w FND I am getting ready to go for a spinal tap in a week or two. They are checking for pressure, as well as MS and many other things. I want to say your videos helps so many of us😊! You are a warrior

Hi Chris. Just came across your videos. I was diagnosed with fnd March last year also. I have migraines and tics both motor and vocal although the vocal only appear when very excited or very anxious. Great to hear your journey and willingness to share. As you have said its hard mentally when friends try to understand but can't. Keep the updates going. All the best

Hi Chris, I was just diagnosed with FND a month ago but have been dealing with symptoms that have been deteriorating for well over 5 yts. Like you I have migraines with constant dizziness and frequently have vertigo. I have constant double/ blurry/ tunnel vision. I also have huge swallowing issues. Have you also lost your sense of smell? Relate to everything you shared. I too have had to give up driving as I had a blackout while driving.. I havent been at works since April(24). I feel like I have to justify being sick to everyone as FND is mostly seen as a mental health issue and people react to a PD diagnosis with sympathy , but just go owh and look away when you mention FND. It is hard learning how to navigate through each exhausting moment , all the while those around you wondering when you are going to just snap out of it. Grrrrr.

MS and FND are commonly misdiagnosed by the way. I hope they find out a way to show what’s happening is real regardless of a lesion soon.

I completely agree with this whole post Chris. My mri showed disc degeneration and I had some injections in my spine a year ago. My brain mri shows 2 spots of high intensity light, 2mm each spot, but the neurologists say that these are age related - 46?! and not in a place they’d expect to see given my symptoms? The scan report says possible gliosis. Which means scarring. The spots haven’t grown in 2 years - I take high dose d and a med called LDN. An anti inflammatory drug as I have many neuro cognition issues and ME also. My bloods reveal systemic inflammation, possible small vessel disease in the report. My argument to them has been that yes I meet the hoover sign and I have had a lot of trauma and stress in my life. But every symptom that presents that doesn’t fit the FND pattern should be investigated rather than simply explained as FND and that explaining away head pain, visual disturbance, bowel and bladder issues, balance mobility numbness tingling etc etc cognition and fatigue and pain as FUNCTIONAL because computer says nope is negligent. I have learned that if you ask for tests and they refuse you can ask them to note this and why on your medical . This often results in the correct investigations being done… I had to make a complaint to get them to rule out MS and neuro degenerative disease - my father passed this. If i hadn’t made the PALS complaint id still be none the wiser re the spots on my brain.

Thankyou for sharing I am on the same journey 😢

Iam glad your test turned out good I agree with you. These internal & head tremors drive me crazy. I have a bad back & neck but I refused back surgery the neurosurgeon said it has nothing to do with my symptoms I refuse to believe that . Thanks for posting good luck

Hey! Just wanted to say that i really enjoy watching your videos, and seeing how far you’ve come on your journey! As a fellow FND sufferer from the UK myself, i’m a member of the FND action group on FB, and i find your videos really inspiring. I think its awesome that your trying to make more people understand FND and what we all go through.

Chris I had a 90 min MRI scan 3 weeks ago everything has come back normal!! I really thought I had MS I now have to have a electric test!! But still no clue as to what is wrong with me!! Been going through it since 2008 but the last year is when my body gave up! Stick in the brother you are not alone 🫂

Hi Chris, Has the medical profession considered Cervical Myelopathy , ie is there a possibility of spinal compression, anything in your past that could have possibly caused issues to neck etc (I'm not a medical professional, just looking at as much evidence you portray in videos) .

Sydney banks quote a ball of energy turned into matter

Totally relate with everything you say. Thankyou for another great video. I struggle so much with cognitive issues that I can't explain FND very well so thankyou for explaining this awful unpredictable illness really well. I show your videos to my family to give them a better understanding. Take care 😊

Well said mate, I feel your frustration. I'm 3 months in to this now, every day is a battle with myself. My symptoms are so variable is the hardest thing to deal with. I can have brief moments of something resembling normality every now and then though, so they give me some hope to cling on to. I feel what you're going through and keep the videos coming

Same, clear mri, bloods etc healthy but I'm the same. I have seen a neurologist now who is of the opinion my symptoms are functional.....Will see him again and another neurologist who has a special interest in fnd over the next few months. Its how you manage it in the meantime isn't it. I have found a lady called Kerryn Withers-Green, fndwellbeing who has lived experience of fnd and runs online sessions some of which are free. You might find her website helpful 😊

100% agree with you my FND warrior

Hi CHris - how did you know what was wrong with you before the MRI. I have FND but was diagnosed in a week after MRI was clear

Scans always come up clear for me too the doctors always use the software system conversation yet they still put me back to bloody mental health.your videos on your journey are helping me very much that's probably making me look like a stalker because I comment on most of your videos lol I'm not though. you are not alone ,for sharing your experiences you are really a blessing to others who suffer too😊

Hi Chris, sorry to hear you had to wait that long for the MRI results, but try to think positive with that of what you don't have. It is so frustrating in the wait and see approach, test after test and still not 100% on how to treat the symptoms. Sometimes I feel like the ginny pig (poke and prod) with no answers. A big thing for me was acceptance of my FND, and a big relief was getting into a great FND program at Massachusetts General Hospital, where they have a whole department dedicated to FND (it is awesome). I'm not sure if something like this is near you but it has made a huge difference for me. The doctors and therapist all understand what I am going through and have ways to treat me. I'm a real positive person so I look at the possibilities of where I can be in a year. I also like to help where I can and the PT is taking videos of my visits so they can use them in their conference presentations and so other other patients can maybe learn and see that they are not alone, that others have the same thing. God Bless, keep pushing forward. I have an ear you can bend whenever you need.

Same story here. Waited 2 months for my letter too. Though they did see some damage in my frontal lobes, my neurologist still thought it was FND. I sent him a letter with some questions afterwards, and he kindly phoned me the next day. Naturally I asked for my MRI photos first, and looked at them myself. Of course, I am not a specialist, but I wanted to make sure everything is "accounted for" so to speak. He said that the damage in my frontal lobes were most likely caused by my many Migraines in the past (no doubt some springling of mini strokes? I will see my neurologist again in September, so I can ask more questions about it). I also read that many symptoms in FND come and go, where with MS, a lot of symptoms are there to stay. But. many of my symptoms are there 24/7, so ..... In my opinion FND is certainly part of the story, but I can't help feeling there is more going on. I have started a pain diary and I am also noting down all the symptoms I have per day (next to the pain I already have due to a double herniated disc in my spine). This helped me to see that a lot of these symptoms are really here to stay. The research continues, as I am determined to understand it. I wish you good luck, Chris.

100% with you.. with my symptoms I’m convinced I have MS but mri showed disc indentation in two areas of my spine.. all sorts of weird symptoms now being put down to FND .Good luck on your journey too

Thanks for sharing your findings. Its only 4 weeks since i was told by my gp i may have FND. Now waiting on neurology to contact me for assessment. I too have cervical spine damage which has caused me almost no issues my whole life. Then i got covid in july. My arm and leg went heavy and twitching the very next day. Now my face goes numb and most of my body feels fatigued except my left arm. It feels normal. Weird.

Hi Chris , I'm 100% with you on everything. It's been 4yrs now and still frustrated with it all . A Lot more symptoms now ontop of original symptoms, pins and needles , tingling skin , numbness etc , I have Rheumatoid arthritis too. I had the same thought MS but don't want to mention it to GP as I feel what's the point 🤷‍♀️ they won't listen . Take care Chris

Look up Dr.Sarno- mind body syndrome. You will chase this forever the longer you look for a dx for what your mind creates.

Thanks for the update Chris Like wise I have cervical and lumbar spine damage and they just said it is down to my age, Personally I don’t half of us people have FND it is the consultants looking for a easy option to save them looking then they just leave you to get on with it not one person realises how much pain we are in some days what we are dealing with Like you said MS and Parkinson’s are very similar but they get treatment we don’t we are nobody’s to these people And now we are tarnished with these 3 words we are either mad loopy or putting it on according to these doctors Good luck Chris thinking of you

🥰 thanks for sharing Chris.

I had a normal MRI as well also research has shown that most people with fnd have an abnormal functional MRI if you watch my recent video called shocking new facts about functional neurological disorder I talk about the recent research that has been going on about FND

I had the same exact outcome! I know how you feel! Hope you feel better! 🙏

I understand this 100% mate! For me like you waited for results and yes like you nothing to unusual!!! FND sucks and no one understands why!!! Take it easy mate!

Just letting you know that you're not alone. I have the same speech problems. I told my daughter that you were the male image of me. I hate that you are going through this. I wouldn't wish it on my worst enemy. Hang in there and thank you for helping me.

Central sensitisation is a beast😊

What’s your treatment?

I am so sorry you had to deal with that. Hope all heals up quickly... you're not alone. I have been seizure free for many years now. It takes a lot of mindfulness. I have unfortunately have had tremors come back. I had seizures to the point there were several per day for over a year. I am glad they're gone.

how long have you had FND?

i took a really long walk round my estate and i could NOT get back home. my right leg was hurting so bad and i literally could not move anymore. it was so scary.

hey. i just wanted to know if you’re on any medication. i’m on prozac. for about a month now and no improvements.

I have just been diagnosed with this of yet I have no support this video has helped me as its scary having these symptoms and to finally know I am not the only one .I'm in my 60s been happy go lucky a runner ext to now hardly walking people asking me if I've got dimensior slow in responding slur speech, I wish I had support just to talk to someone with FND to understand this condition