But it's b I t different over here more like has MS buuuut if ABSOLUTELY ms then there's a comorbid thing going on that no doc will care to listen about even though she's an experienced (35+ yrs) RN and knows that there's stuff going on (full eyelid apraxia(DEBILATATING!!!,)history of chronic fatigue syndrome. extreme ibs, psych changes... Smoker ex alcoholic.) Idk how to advocate further for her? (My mother..) please help before I loose her to taking her own life due to zero QOL. I HATE MS 😢I wanna cry... *edit - glandular fever not CFS but was negative for EBV ab’s ¿…? Ahhh it’s a f@$&#ing mess and puzzle. I'll fix her one day 🥲
Forgot she also doesn't experience relapses? She's contistantly unwell ever day,some days worse than others but has no clue what these relapses are even meant to be that are always mentioned as nothing goes and comes in the meaning of relapses.... So confused.....😢
My daughter has FND which is functional neurological disorder. She got her symptoms following a panic attack when is was just 13 years old. Her brain scans CT and MRI are absolutely fine. This is Because there is no damage happening, but her brain and central nervous system are not communicating properly. Her symptoms are very varied and can sometimes mimic those of MS
Check your thyroid glands and ask for a full pannel thyroid test doctors only check TSH make sure you tell them you want to do the T3 T4. Because your TSH Might be normal but T3 T4 maybe low. The thyroid gland is a battery to all your organs if not working properly nothing in your body will work as it should. And ask for your blood tests and leave it with you
Great info! I was sent to ENT for vertigo. MRI of my inner ear had an incidental finding of brain lessons. ENT sent me to neuro, who ran with it. Every test they threw at me was positive. I had a confirmed DX of MS within 2wks. Yay me! 🤦♀️
Exactly how I was diagnosed too. I also had severe inner ear pain that was unexplained. I saw two different ENT/neuros at different places to find someone that would pursue answers though. One was a resident doctor that was not being adequately supervised by an attending doctor.
I remember after my first two MRI, my regular doctors just said it's mild prolapsed disc. 2 years later, I was at a main hospital, paralyzed waist down, in pain - after I was sent for MRI in-patient & radiologists saw my MRI and was alarmed and immediately contacted my neurologist, that was when my neurologist came in and got the story of the history of what had been happening for years before to correlate with the MRI findings. So this really takes me back to the time when I was diagnosed.
I have Migraine, Exploding head syndrome, Cervical instability, Neuropathy and Eds. I experienced MS hug which was super severe. My neurologist in Denver said NOP, it is not MS. God bless your life and knowledge Dr. Boster❤
I saw a neurologist and went with the intentions of seeing if i have MS, I was and still having major cog fog. They never did the contrast dye mri. Instead, he talked about losing his wife recently to brain cancer, that was sad, and then sent me to get a psych eval. Well here I am 3 yrs later, and now I have bladder incontinence and retention. I've had dismotility of my esophagus for years now. I have IBS with constipation. In the past I've had vision issues that would come and go. I've been in glasses since I was 5. In my late teens I started having pain in the back of my eyes, I had Mononucleosis as a teen, and Scarlet Fever. I always lacked sleep as a kid, the school noticed, but my mom never let me sleep or take naps as a teen. At 53 yrs old now, I've had many of the MS symptoms. Where do I go now?
Sounds like a malpractice lawsuit, these doctors need to stop getting away with calling patients crazy, it’s 2023 ffs. I had a male doctor do that to me and I reported him to the medical board.
Check your thyroid do a full pannel blood test not just TSH which doctor will only check tell him you want to do the T3 T4 too. Also check your vitam B12 and vitamin D. Get checked for Lyme s disease which can mimic MS
I have a similar experience..52..had symptoms for years now..told my mom that I thought I had MS..due to the way heat affected me and all the weird tingles..anyway..I was told same as you..may need to see a psychiatrist ..which was very annoying.
Great video Dr B! I had mild remitting MS symptoms for 16 years before a formal diagnosis. Unfortunately the diagnostic journey began when my vision declined to 20/200 in one eye and never recovered. Since my only major symptom was vision loss and my MRI showed non active brain and spinal lesions, my MS neuro sent me for a spinal tap to confirm which it did. I had vision problems for many years before then along with annual eye exams that didn’t show any problems. I was told multiple times that my recurring blurry and cloudy vision issues were allergies until I wasn’t able to read an eye chart.
This is so reassuring to me. I have blurry vision all the time and eclipses in field of vision but the eye doctor can’t fine a single thing wrong. 😑 maybe with time then. I am glad you finally got a diagnosis
I have been watching you since my own limbo starting back in 2020. Started with optic neuritis, positive for oligoclonal bands in CF, and lesions but not quite enough or in the right spots to confirm diagnosis. Yearly MRIs all stable until my early September MRI this year where I officially hit that last criteria box. Thankfully the new spot is very small with seemingly no symptoms from it. It’s easy to feel lost in what I called “The Gray Area” but your videos have been very helpful and extremely reassuring while leading up to the actual diagnosis. Thank you for sharing your knowledge with us.
I’ve been in limbo since 2015…6 MRIs, 5 neurologists, optic neuritis…too many issues to count. Tomorrow I head back to neurologist after a year of cancer surgery and treatment, which made everything worse. It’s exhausting on a daily basis yet the search for help and diagnosis takes everything to a different level. I truly wish I could meet a doctor as compassionate and knowledgeable about MS…the “gray area” truly leaves a grey haze on daily life.
I am currently going through the diagnostic process. For years, I’ve been looking up random symptoms as they came up and all of these symptoms were directly related to having an upper motor neuron disorder. Mind you it wasn’t just the common symptoms I was having, the one that actually made me realise it was MS were the nummular headaches, which are a unique type of headache almost only found in MS patients. My electromyography was fine but the doctor doing the test noticed I had clonus not just on the left side leg and arm, but also in my right leg. This was not written down and I had to relay this information to my doctor myself not even knowing how to spell it. My brain MRI came back “unremarkable” even though I have every signature symptom of MS and even some elusive ones. I have yet to hear anything more on the matter. I got a neurology referral that will be processing for the next eight months, meanwhile my left side is fully symptomatic and worsening, and my right leg has begun showing signs. I switched from tennis to pickleball and my legs still give out under me (because of drop foot or heat induced weakness) if I get just a little overheated. My tremor and fatigue continue to worsen to the point that I can’t write or stay awake even on ADHD meds. I am only in my early twenties, I don’t have the time or money to play the waiting game. I know what I have and I tested positive for all but one of the medical criteria. I mean not everyone with a condition will have the same presentation. Getting the official diagnosis sooner is important because it would allow me to get treatment and accommodations that I now need because of my worsening condition. It is unfair that I cannot offer a medical explanation for my debilitating symptoms in my work and academic environments.
A brilliant video Dr. Boster! So many of us have a long diagnosis story and it is so helpful to hear diagnosis criteria, what else it could be, and what we can do in the mean time. You are a gem! 😊
My diagnostic story is quite unique, I never bothered with the small symptoms, signs of MS, it wasn't until I was watching Sleepy Hollow by Tim Burton and I saw two headless horseman coming at me I knew that wasn't right, Tim Burton is odd, but not that odd, the next day I went to the ER all blood test, heart test what ever came back normal, they sent me to a Neurologist and within 15 minutes of listening to my history he smiled and said, I know what's wrong, let's get an MRI. Hasn't had one yet. The next day I kept missing light switches on my left, I called the Neurologist, he told me to go to the hospital, I walked in with no help, by noon I was paralyzed on my left, could not stand or even walk on my own. After the MRI and Lumbar Tap. He told me I have MS. That was 23 years ago. The doctors at the PT hospital I went to, to relearn how to walk told me I would be in a wheelchair in 10years, like I said that was over twenty years ago. I think I'm doing well because I have docs like Aaron Booster and my first Neurologist Glenn Robbins!!!
wait your saying it made you hallucinate? my dad had ms and was abusive to aniamls often. in your opinion could that be the connection? also glad you are doing well!
Im following you.. im in that limbo. Had a stroke in my spinal cord in November 22 and by chance found lessions in my brain mri. Im experiencing scary symptoms. I am now using a suprapubic catheter, have incontinence. I havent been able to walk without a wheely walker. I suffer migraines and my life has changed 180 degrees. Im sad and needing answers. I want my old body back 😢
My Neurologist was pretty convinced I had MS. Over a year and lots of tests later, I received a diagnosis of PLS ( a form of motor neurone disease. It really can take a long time to uncover what’s really going on, as so many symptoms overlap with other conditions. Don’t give up until you find out!❤
TY Dr. Boster I appreciate your candidness. I've been dealing with issues for over 20+ years trying to find answers only to be getting worse. I'm now determined to get answers, maybe not. I want to live out the rest of my life with atleast some quality to it. I don't want to be a heavy burden to my husband & daughters. I see a Neurologist tomorrow to try to get some answers. Maybe it's not MS, but some other form of neurological disorder. However, I see degenerative issues my Mother had the last 15-20 years of her life she never addressed medically, that I'm now seeing in mine. Now two of my daughters are dealing with similar issues in theirs. I need answers as well as I need the answers for them. Thank you and God bless you!
Ten years of Brain MRIs showing lesions, ALMOST COMICAL DOUBLE VISION, 4th nerve palsy, peripheral neuropathy, ataxia with increasingly nasty balance issues, painful eyes (like someone was PUSHING them out of my socket from behind the orbits!), overwhelming fatigue, increasingly painful muscle spasms in my legs and torso (my then-primary told me "just drink quinine water!"), memory issues (like forgetting where I was going while driving on the highway , then remembering but had NO idea the route there!), brain fog, and myriad other issues...lots of testing, like evoked potential, testing for CAUDSIL and other disorders that were thankfully NEGATIVE. TEN YEARS and NO definitive diagnosis! I left that medical group. Now at 75, I'm told by my new respected neurologist that it's MS, but he is hesitant to start me on Ocrevus (due to my age and nasty potential side effects), so he refers me to MS neurology specialist at major medical center in NYC. She examines me and views my copious MRIs (over a dozen, including thoracic and cervical) and she smiles and states "You do NOT have MS!" And yet that news was only vaguely welcomed...because if not MS, then WHAT? And so started a now 4 month journey of a plethora of bloodwork/testing, investigative genetic testing, and presently looking at vascular inflammatory connection....I am DRAINED, both EMOTIONALLY AND PSYCHOLOGICALLY. Genetic testing and copious symptoms point to leukodystrophy as well (yes, I researched that and info was distressing)...and while all of this is being played out, my brain continues demyelinating, body has become more affected, and I am at the point where I wish I could just not wake up from my barely 3 to 4 hrs of sleep that I generally manage nightly. Have had no headaches but "BRAIN PAIN" and other scary symptoms. I have a video visit tomorrow, with her and her colleague. At this point, I'm not feeling very hopeful but willing to listen to what they have to say. Yes, Dr. Boster, life is hell when caught in this limbo.😱
When I asked a neurologist to please review my brain MRI h told me "NO, not MS," when I asked what could be causing my symptoms, the arrogant prick put his hand to his neck and said " I only work from here up"indicating the head, He brushed hs hands together to indicate he was washing his hands and walked out of the exam while I was still filling out my symptoms list on my admittance as if I were not a person, and he only agreed to look at my MRI. He never returned to the exam. I hate doctors
Unfortunately so so so many of us have had similar experiences. I have hesitated to go to doctors with my symptoms because I have been told more than once that my symptoms might just be my subconscious attempt to get more attention from my husband. I also look healthy, and I've had to explain that as well. If I'm so sick, how come i look okay?? As if I'm faking cancer or something. I hate doctors too.
Wow, if I'd had you as my neurologists three years ago, I wouldn't now feel traumatized at the thought of ever seeing a neurologist again! I had neurological problems that turned out to be a side effect of, what turned out to be an aggressive form of NHL (T cell lymphoma). The neurologist was clearly bored of my symptoms and so diagnosed me with FND. Once I had that on the top of my medical chart, no doctor wanted to investigate anything. I believed I was dying... I was dying and nobody would listen to me, until I became very obviously seriously ill.
This has been helpful. I'm going on three years with neurological symptoms, but no answers. It's frustrating to be in limbo, and hard to keep up the hope that I will find out what's wrong.
I would try and set up a appointment with you if you weren't so far away. I live in Tennessee. I have neuropathy and weakness on right side. I got a f on the MRI 😳 big time. I go back to the neurologist tomorrow.
Thank you so much for all you do dr B! This just happened to me last week w my ms dr....i am 2 weeks away from my next octevus infusion, and my fatigue has returned profoundly. My ms dr says it has nothing to do with my ms....even though its the same fatigue that brought me to the ER (along w other symptoms), which led to my ms dx. He says that ms doesn't cause fatigue, and I beg to differ. It is very frustrating. Thanks again dr B for touching on this topic....Absolutely LOVE your videos and your dedication to helping others. You are Amazing!🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥
Hey Katie, that is a very typical experience of patients on ocrevus. It is called "the crap gap". I've been on ocrevus for three years now. I learned from other patients that ocrevus can be given every 5 months instead of every 6 months. I will begin a new DMT in December. It is a monoclonal antibody like ocrevus. It is called Kesimpta. It is a monthly dose that is sub q injected that we can do at home ourselves - so no 4-5 hours at the infusion center. If it is possible for you, consider a new neurologist. Wishing you well
So happy you touched on this topic, as many do come with these questions especially in the pre diagnosis stage ( or after Dr Google consult)- i will definitely recommend and share this great information. Have a great day Doc, #StrongetTogether
Had a sports injury in 2017. Was told I had a mild concussion. Said my brain actually moved during jumping rope on the concrete floor. Had some eye issues and neck issues but other than that was fine. However, now strange symptoms are showing up that are MS related Finally got untangled from the medical web and decided to go out on my own with holistic practitioners. It seems to be doing just fine I love this video. Thank you so much for being a bright light amongst the dark.
I had post viral syndrome and had many neurological symptoms. I got an mri first ER visit. Wasn’t told until later there were spots on my brain. Once out of the hospital migraines got worse and more frequent with more spots on the next mri and then on the third mri too. MRI scan reads that I have early signs of MS, I also have had mono 3 times. Neurologist says I don’t have any signs of MS. So crazy.
Appreciated! Brain MRI was “borderline undiagnosable” due to the huge artefact caused by my cochlear implant, yet my doctors are still leaning away from suspecting MS. But no one knows yet why I’m having visual symptoms, balance issues, etc. I’m getting the visual potential test at some point soon, but otherwise everything’s at a standstill for now.this is super helpful in making me feel more reassured that I’m not just viewed as making things up while also giving more grace to the fact that everyone is scratching their heads right now.
Dr. Boster, Fabulous Video! I have been an MS Support Group Leader in Boynton Beach, FL for many years. I was Originally Diagnosed with MS while living in Boston in the 1990’s. Still maintain contact with many of the original Group Members when we had Monthly Meetings at the Library in Boynton Beach until COVID changed everything. Currently we meet on Line every month with a smaller group. I am hoping to eventually have Live Meetings again which were far superior to these On Line Meetings. I would love to show your Great Video To all of the Support Group Members Eliot Reinstein MS Support Group Leader Boynton Beach, FL
I have every up there and down there symptom but 2 pair mirror OCB in the CSF and Serum. I have no hope left because I saw Rheumatology and was Negative for Lupus and I need a diagnosis to be able to ask for what I need. Without a diagnosis you can't ask for a cane or any help when you can't comprehemd paperwork, when you struggle to drive, or lock yourself out of your house and parents like moms need to make sure they are fine when they have their kid's schedule to follow and there are no exceptions if they have a deadline and you aren't well enough to make sense and help with schoolwork or fill out their documents. I can't walk or read. I now use the wrong form of words, misspell, say my sentences out of order and say words out of order and I have moments where I struggle to talk like I'm trapped in my brain. I never used to mix up different forms of words or forget how to spell. When I type I type the letter next to the one I want because of weakness and double vision. I drop things and miss like a drunk person when I go to pick them up and run into doorframes. I closed my trunk on my nose and broke a $300 pair of glasses. No one ever asks me if I have to go to the bathroom a million times a day/night or if my muscles down there work and all of them do the oppositive of what they are supposed to do. I wanted to become a pediatric nurse but because I'm not able right now now one cares that my life may always be in the future while I age and I'm not even 30 yet
Hey Dr B. I was diagnosed with MS Remitting-Relapsing earlier this year after I was admitted in hospital. All the tests you mentioned were done and the conclusion was MS. In 2014 the vision in my right eye became blurry, MRI was done...White spots on brain, was told then not MS but CIS. Over the years the numbness in fingers toes body would increase then vanish, but then pain in my back increased and effected my spine... my walk...some days better than others, I'm just trying to keep on top of my nutrition etc.❤
I really needed this video, just got my LP tests results back and it was normal. I have several symptoms of MS and several lesions on my brain in the most common areas (juxtacortical and periventricular) U-fiber and more, I was told to repeat MRI in a year or if I have a NEW symptom. This is very frustrating, neurologist says she doesn’t know what wrong with me 😢 I feel like doctors think I’m crazy and with the normal LP the neurologist has washed her hands of me. I feel extremely defeated.
This happened to me - after a year I had more MRIs (positive) and a second lumbar puncture (still negative) and got my diagnosis. It was really hard having to wait.
@@emmabrooker166 really!?! Thank you for sharing this with me!! I feel I’m alone sometimes and no one understands!! My primary doctor said I need a second opinion and is sending me to another neurologist.
Oh I was sent to a psychiatrist and psychologist when the first neurologist couldn’t figure things out and he sent me over to another neurologist. So, now I’m working with him….
This was so useful, I am going through this at the moment. You said exactly what my neurologist said but in a much nicer way and explained it. When I asked what else it could be he just shrugged and I left feeling very unsupported and not reassured at all. Just waiting for a repeat MRI. Im convinced now its not MS but I cant switch my brain off untill my next scan is clear.
😮 You have cleared up more than any neurologist ive ever met. Also mentioning Neuro optimologist was helpful. Mine is going crazy trying to figure out whats going on with my eye. A neuro op is who I need to see. Thank you so much your channel rocks!!
This is where I am in my journey for diagnosis. I have neurological symptoms but not diagnosis just follow up appointments but I still live with tremors, cog fog, eye issues and left sided weakness with low muscle activation. I have ended up using RUclips Physical Therapy videos to help with the weakness on my own.
Thank you for this very informative video. My husband will be seeing a neurologist tomorrow. Your videos have been very helpful to both myself and my husband to prepare for the neurology appointment. God Bless you and your practice Doctor B.
Thank you for this valuable information. I have neurological symptoms and lesions in the pons, but I don’t think I have MS. My orthopedic surgeon doesn’t believe that my c-spine issues are the cause of my neurological deficits, but I do. The saga continues. 🙂
Thank you so much for this I had 3 lumbar punctures multiple MRI'S and tests as scan all looked atypical of MS . Then when they diagnosed me and I asked why do u think it is MS now? I was told I needed to go to a psychologist to come to terms with my diagnosis! 17 months on Tysabri feeling yucky and new enhancing lesions. After seeing your red flag vids I asked to transfer to new neuro. Had to come off Tysabri waiting for appt with the new neuro. New neuro said no need for more meds, watch and wait approach. See u in a year. Off it for 9 months and never better. Do I still need to worry about rebound?
I should mention that one of lumbar punctures showed up viral encephalitis which explained the excruciating headache, seizures, vomiting, light sensitivity and my total confusion. Sadly I started the treatment for it really late so the cognitive function is permanent. 3 yrs on I am physically better now off the Tysabri but still have severe cognitive problems. The new white spots were result of APS and high blood pressure
Great video and very helpful! My MRIs are clear of lesion, but I have symptoms which are very much like in MS. The reason seems to be wear and tear in spine; both in neck and lumbar region. I have left side weakness (like line drawn in the middle of my body+face) and pulging disk in the lower back causes saddle area numbness and weakness. I am suffering from serious fatigue, heat intolerance, flushing and malaise episodes (with blood circulation issues?). I have episodes of "silent" migraine where I suffer from double vision 2-3 hours. +++other symptoms. This combo looks so much like MS that it is hard not to be suspicious of it regardless of the clear MRIs. It is good to know that this can also be the situation and in that case what should happen. And that the limbo of not having clear diagnosis, is still something to be taking a note off! Also, I realised some time ago that having heat intolerance can happen in any situation effecting the nervous system. So even that I do not have MS, my life can look pretty much the same than somebody who has it. And that symptoms can be treated regardless of not having definitive diagnosis! Thank you so much! Being in the "limbo" of not having diagnosis is literally nerve wrecking! And any help, information and validation towards it is extremely helpful for a wide audience! 💗💗💗
The problem with waiting so long for a dx is that is what is frustrating or depressing. Doctors keep saying you're depressed but it's mostly just dealing with Doctors for me. Just tell me what's wrong without taking all my money. I still owe 4k dollars for MRIs and that's with insurance. I'm not really depressed but I need to know why I have all these symptoms without a dx. My MRIs were horrible because my foot kept twitching too.
I'm having the exact same issue as you. Got 4 MRIs done (head, neck, upper back, and lower back) and they all came clear. I have peroneal neuropathy on my left side (confirmed by EMG needle test) and difficulties talking and swallowing on left side. My lips are also more droopy on the left side. Also, I have severe insomnia now, always tired, heat intolerance, memory issues, and unstable emotional control. So I don't know where I stand now... I will see my neurologist in a couple of days. I was almost certain it's MS. But I am very scared of the possibility of ALS 😢
It takes a village but without insurance you are on your own. I needed an MRI, If I had the thousands of dollars they wanted as my insurance declined, I would likely have a diagnosis, My insurance insisted I get an EMG first. That took 7 months to schedule >:( I'm 56 and will likely not make 60 because healthcare is for the wealthy and health I don't care is for the rest of us
my symptoms started in 2011 after a massive, wrong-threated EBV infection. I was diagnosed with Fibromyalgia, CFS, Depression..anything you can think of. Then finally some doctor was brave enough to do an MRI and my brain hat several big lesions. I got, after a few more tests, the diagnosis of MS. And instead of doing something, they put me on lifetime retirement at age 35. Nothing ever happend since. I moved from germany to Belgium three years ago, everthing exploded last year and I have an apponyment with areally good specialist soon. Problem is, I have to go trough every single thing all over again as the german doctors refuse to send my medical history..very, very frustrating 😢
My doctor's tried to put me out on disability when I was 28. I said NO. WORKING UNTIL I WAS 62. THE heat in our High Desert valley wipes me out. I would be hospitalized 3-5 times each summer. I finally got them to do my IVs at home. HATE THE HEAT
Your channel is amazing. I love it. Just a quick question for you.. I had an mri of my brain that showed non specific white matter lesions, mri of spine clear but lumbar puncture came back with Ogliclonal bands. What is literally going on?
So glad I’ve found you. I’ve had a cervical fusion years ago due to stenosis, not successful and still in chronic pain. I’ve now got electric shocks in the other arm and leg when I put my chin to my chest, totally different feeling to my stenosis symptoms. I’m going to see my GP tomorrow.
Thanks for all your info. I’m daughter 48 has had 2 previous MRI and having 2 more MRI in November to help confirm what’s happening with her. She had pain and numbness 2 wks. ago after 8-5 visit to the emergency ward she received meds. that are doing their job along with going for physio.
Nice video. Sometimes, radiology reports which say "cannot rule out demyelination" are simply inappropriate, and when I review the films, the white matter changes are clearly benign "unidentified bright objects" (UBOs) or leukoariosis (vascular changes). Other times, the findings are ambiguous which is where careful history, examination, and sometimes CSF can help. One thing which is very hard for people to believe is that a very high percentage in the general population will have some type of white matter change on MRI of the brain. In an ambiguous case, I personally would favor follow up visits and MRI scans rather than doing tests like OCT/VEP/CSF. In a clear case of "not MS," I offer confident reassurance. I will say things like, "Your risk of MS is now less than mine because you have made it to age XX without any brain lesions typical of the disease."
Thank you @AaronBosterMD for this video. I seen a neurologist a few weeks ago. Checking me for MS, stiff person disease etc etc. The neuro was really excited about my brain scan. He said your brain is so perfect, Especially because of my age & health with all kinds of physical problems. The neuro throwed all my symptoms Under the umbrella of Fibro. I have been almost bedridden for 13yrs. My muscles stay engaged super tight everywhere everyday There is no break of the Chronic Pain for me. It causes me to have total back pain & spasms can go from lower back to full body spasms. They last around 5 hrs or longer. I just do not know where to go anymore. I am thinking Fibro is a big crock of Bull & Drs just put you there to get rid of me.
Thank you Dr Boster for your massively helpful educating videos. They show you have qualities I can't find here in OKC, OK. You have an awesome caring & compassionate way with your patients. I wish you were here. I've had all kinds of neurological symptoms for the last 2 yrs that I think may be MS & why I haven't recovered from my fight with the Delta 2 yrs ago, which left me disabled. Now a brain mri has found a 7 mm aneurysm on my paraopthalmic artery. Could that be the cause of my symptoms? I am overwhelmed & frightened. This neurologist won't even look at the scans till tomorrow because he's not scheduled to work till then. I've been very upset since I found out last Thursday afternoon. Lord, I wish you were my neurologist!!!
I was diagnosed with MS June 2022 when I had a TIA. The MS totally explained the bladder, bowels, tingling hands and feet, falling, balance issues, migraines, and on and off sight problems. I'm still figuring out when a flare up.
Hi, I’m from the UK. Wow, this is the best video I’ve found on RUclips regarding white matter hyperintensities/ms/cognitive decline. I’m going through this process right now. Thank you so much for giving us more in depth information. 😊
I’ve seen 4 neurologists so far. I’ve been ridiculed by one (literally) dismissed by one and so on. I’m going blind (Optic neuropathy) rapidly, depressed (being treated) and I’ve given up ever (being dx. If anyone knows of a kind doctor between Chicago and Madison or even Detroit, I can get there. This is true he’ll.
Thank you for this video. My wife has some weakness in her leg that comes and goes. They did find a spot, but her follow up MRIs showed no problems on her spine. We are going for a nerve conduction test, and of course, the possibility of ALS. I am also encouraging her to get physical therapy, as she sits a lot is overweight, and it could be some other sort of physical cause, including sleeping glutes. Her conduction test isn't until December, and I am freaking out a bit, but this video has helped me put things in context.
Great video Aaron. I love to see doctor’s sharing their knowledge via RUclips (or other social media), moreso when it is done with passion and in an engaging manner 👍. I have an inherited cerebral small vessel disease in which demyelination is a feature and in which characteristic white matter lesions are apparent on MRI. It is called CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy). I know that many people with CADASIL have, in the past, been misdiagnosed with MS. And, rarely, some people have both CADASIL and MS. I’m curious to know if you have had patients who have subsequently been diagnosed with CADASIL (via a blood test checking for a Notch3 mutation, of which there are several hundred known variants)? Keep up the great work.
I’m in limbo. Your videos have been so important on my journey. This year I’ve been dealing with breast cancer and it has aggravated the “MS” symptoms. I’m wondering if the flares have increased due to aromatase inhibitors post mastectomy.
OMG I wish I could come see you. In Denmark public health care is free, whereas a referral to a private neurologist has to go through either the hospital or your GP, neither of them being overly willing to make a referral. I've been in limbo land, experiencing a variety of symptoms for the past 18 mo. (poor balance, loss of periferyl vision, loss of bladder and bowl control, numbness in feet, raynauds in hands, lhermit sign, spasticity in both arms and legs, and periods with massive brain fog) My MRI came back negative for MS in oct 22 and jan 23 as did spinal fluid tests. For now my GP just wants to wait and see as he says, that 4 or more "flair-like episodes" (whatever thst is) in 12 mo will get me a referral. No treatment in the meantime😢
I’m there. My toes, feet, ankles and legs up to my knees are numb 24/7. Then my finger tips up to my elbows are numb. I have been diagnosed with Idiopathic Peripheral Neuropathy. I am exhausted 24/7. I fall asleep constantly. Just recently my right eye is painful and I get double vision. It comes and goes. This have been going on for four years. I sometimes will be talking and forget a word. It’s weird. Just a word.
Yes, just a word .. and then I can't remember any words to describe the word I want to say... Like the entire definition is gone. Oh, and forgot where my stepmom has been living for 15 years .. literally did 4 u turns up and down the road before I remembered
This is where I am right now. No ms spot on mri but neurological issues everyday. Now what ? They say parenthesis? They don’t know why!!! Now what ? These are real symptoms. Stuck in rural Montana. Help❤
I follow you and learn alot about my MS journey. I am about to start 2nd phase of Mavenclad, but my alc is 420, so we are going to have to wait till I get about 700. My MS doctor knows you (Dr. Berkovich).. I fully trust her, and up my game by watching you. Thank you.
Told I don’t have MS but I have all of the symptoms. Blood results aren’t back yet. MRI without dye showed transverse myelitis and with dye it said artifact movement didn’t give a clear image, I fell asleep in the machine…there’s spots on the brain MRI. Cognitive impairment, left leg gets weak and I get intense pain, severe constipation but CT said I wasn’t constipated, I definitely couldn’t go for over a week and needed to take 10 senokot tablets to go, I get bad insomnia, five days was my longest stretch. I am not a lazy person, was always go go, go and now I’m in bed all of the time. Had cervical laminectomy with fusion for severe myelomylacia, I randomly just drop my coffee cup, I have had bladder issues, the cognitive issues have made me feel like I’m getting Alzheimer’s, been feeling overly stressed (a lot actually going on to justify that), severe mood changes. Just want to know what the heck is going on. I don’t want it to be MS just want my life back! I use to walk 16km a day, home was spotless, loved cooking, cleaning and caring for my family.
It could be functional neurological disorder. Look it up. It is real physical symptoms but it won’t show up on any MRI scans, it can get better as well in time and completely go away.
My neuro diagnosed me and I was sorta in denial until my OD was like, gently trying to tell me my symptoms and OCT were concerning and I should speak with a neuro. It was like, two days after I found out and I was like Oh yeah, I forgot I have MS now 😭😭😭
Dr Aron Boster. Is a gentleman, the way he speaks and cares about people is amazing, and thoughtful,the way he approaches ailments not brushing them off , like most. Drs , At least he care’s means a lot Wish I lived near him 🫶🫶🫶❤️❤️🙏🏻😘🥰💙
Thank you. Currently in limbo with my husband. He has a mild case of ON, and very 2 tiny spots were found in the MRI, I think one in the brain and another in the neck. But the mri came inconclusive and required further clarification. He did LP, it will take a month to get the full result.
THIS was helpful. I'm 66, having the balance, numbness, "zaps", and other symptoms. My eyes "go out" at times. Back when I was about 28, the docs thought I might have MS and they did the MRI but it wasn't conclusive. They did the lumbar punch (which to this day I am terrified of) and they said "You have the markers in your spinal fluid for MS." I have had stuff off and on, balance mainly, and the zaps, and pain. We've got another diagnosis of fibro but that is the pain aspect and not the other stuff. I'm going to a neurologist again in January and am terrified they're going to say it's not MS but it's not anything else either. We DO have something going on here, and I need to know what it is. Or give whatever it is a name so I can just go on living for the 20 or so years I have left without freaking out every time I feel a zap in my big toe or my elbow, my eyes don't work, or I lose my balance and fall again. I hope this guy is as good, and as kind, as you seem to be.
Highly unlikely and not much you can do about it (surgeries are risky and often not a solution), but have you been evaluated for cervical instability or cord compression?
First neurologist I went to said he thought I had MS, and scheduled an mri of the optical nerves. When the report came back, he said “Nope, not MS, you need a good psych exam”. So, my PC doc scheduled a brain MRI, and yep, very clearly MS.
So just before years end my father would die of cancer giving me time with a nurse to talk about what was happening. We would discuss my Labs which I now keep on a dedicated tablet. I was treated and released from 3 ER's with diagnosis of vomiting with no cause and dehydration. In reality I had experienced HHS, Anion Gap acidosis depleting me of nutrients, Vitamin d3(25) among them. My brains were progressively worse. After my dad passed (cancer) my body would freak landing me in the ER again. This time armed with The nurses information I explained this is not vomiting causing dehydration it is acidic blood causing vomiting. Here is the kicker my blood pressure would fluctuate wildly 100 point swings for "no" reason. I would demonstrate, The nurse came in to check my bp one night, it was 200/110, he was alarmed. So I relaxed, and it dropped 160/90, and he was baffled. I said watch this and I got out of the bed and stood. My pressure would again drop, this time to near normal. it was suspected at one time I may have POTS, i was proving it. Now uninsured, with the knowledge I have SFN an MGUS and likely POTS, I sit with no medical access awaiting a disability determination which is expected to take 9 more months in Texas where medicaid is not available for men. But for you Dr Boster, I would likely be dead. My doctor's "See you in 90 days' would have killed me by now. Currently I am working on supplemented nutrition and mild exercise to keep me out of the ER. My clearheaded assessment would be nerve damage in my neck and spine including a severely herniated C2/C3 disk and degenerating thoracic disks and sciatica causing all my nerve damage. The MRI My insurance refused 2 years ago would have shown, but killing us is easier than treating us. Thanks for all you do and i hope my story will help you or a patient somehow
Thank you again for another great video Dr. Boster. But I am wondering in limbo land if there can be a clear brain and cervical spine mri but if possible can there be lesions on the thoracic spine or lower to suggest ms? I am struggling to get Answers and I'll be happy if it isn't MS but...I want clear answers...to rule it out entirely would make my heart and mind happy. But if there is no mri of the mid and lower spine...how can we know there are no damages. Waiting not so patiently for an EMG. I am losing my mobility. I am using walking aids struggling to keep my day job and know in the next month I will have to give in and leave my job because I just won't be able to get around in the snow and ice. My symptoms covers 5 pages long and not only my legs are giving out, my arms are losing strength with the simplest activity. I don't have access to a Neurologist, most definitely no MS Neurologist where I live the best I can get is an internal specialist. No one has even asked me to walk or have done any of the physical or cognitive tests with me like you suggests. I know you try to read all the comments and I am so thankful for your videos and live streams. I have learned a lot even if it turns out I don't have MS. If money was no option, I'd be making arrangements to some see you in person. I am afraid the longer I go without diagnosis and treatments that my symptoms will become permanent. I only just turned 50 and I'm in worse shape than my 95 year old hone care client. I'll soon have to leave my home care job to have a home care worker of my own. This is sad and frustrating.
A great video full of information and hope. I found a great physical therapist that found all my weaknesses and helped me improve to my best. My vestibular system was way worse than I thought but with exercises, it has improved. She helped me improve my gait with a walker. I had a memory test done by social security that found my weaknesses in cognition. Where to go now to improve in cognition?
Im in Limbo land, Started with severe Lyme in 2007, shingles 11xs, mono nearly killed me in the hospital for 38 days, iced down 2xs. Im on Tizanidine, I have so many of the MS symptoms. The best thing that has helped is Medical Medium protocol. No scarring on my brain.
Thank you Dr Boster, this is an awesome video- I know many people who feel at a loss when they don’t get an MS diagnosis. Relief but also a feeling of - well what now? Why do I have these symptoms? Is it all in my head? Did they miss something? It’s an uncomfortable feeling. So appreciate you 🔥🔥💖🔥🔥
Multiple T2W/FLAIR hyperintensities are noted in bilateral deep periventricular white matter and centrum semiovale region. Some of lesion are perpendicular to calloseptal interface. No DWI restriction is seen. No enhancing lesion is seen.
I wish there was someone like you that could do this with myasthenia gravis! I have the clinical symptoms of MG, but my MRI and EMG came back normal and so the doctor cannot give me a diagnosis. But my life has been significantly impacted down to just normal daily habits like brushing mh hair. 😢
I've been born with hydrocephalus.. then developed Epilepsy.. chronic migraines..increased muscle tone.. chronic migraines..then diagnosed with Dystonia (focal) then progressed to full body.. Dysphonia.. Dysphagia..I'm mute..hypoxia.. coughing blood currently.. BMI 14...cataxia.. carpal tunnel syndrome..ataxia..multiple vision issues like eye floaters and double vision... cognitive difficulties.. losing my language to the point I'm talking in English because I'm speaking English it's not my mother tounge..major depression..anxiety ..anger issues...due to my diseases then..they said MiTo disease .. Also not a boring diagnosis like Dr House says..
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FOUND ONE! TY 😂❤❤❤
But it's b I t different over here more like has MS buuuut if ABSOLUTELY ms then there's a comorbid thing going on that no doc will care to listen about even though she's an experienced (35+ yrs) RN and knows that there's stuff going on (full eyelid apraxia(DEBILATATING!!!,)history of chronic fatigue syndrome. extreme ibs, psych changes... Smoker ex alcoholic.)
Idk how to advocate further for her? (My mother..) please help before I loose her to taking her own life due to zero QOL.
I HATE MS 😢I wanna cry...
*edit - glandular fever not CFS but was negative for EBV ab’s ¿…? Ahhh it’s a f@$&#ing mess and puzzle.
I'll fix her one day 🥲
Forgot she also doesn't experience relapses? She's contistantly unwell ever day,some days worse than others but has no clue what these relapses are even meant to be that are always mentioned as nothing goes and comes in the meaning of relapses....
So confused.....😢
I wish I had a neurologist like you.
Same!
We all do!
Me too!!!
Do you take new patients
me too
This world of illness honestly needs another Army of Dr. Bosters! # those with a Passion to Help in Health from the Heart!❤
I agree ❤ Dr Boster is the best
So agree 💯!
Amen!
@@YeseniaTorres-tv1xvi agree. His videos are keeping me fighting for answers. Do you know if Aaron sees patients from outside of USA?
I'm about to give up asking about my symptoms. MRI normal, yet worsening tremors, tingling feet, weak legs, coordination off....yet no answers.
I'm so terribly sorry. 😥 Must be so frustrating and stressful to not have proper answers for your symptoms. Wishing you the absolute best!
My daughter has FND which is functional neurological disorder. She got her symptoms following a panic attack when is was just 13 years old. Her brain scans CT and MRI are absolutely fine. This is Because there is no damage happening, but her brain and central nervous system are not communicating properly. Her symptoms are very varied and can sometimes mimic those of MS
@@meshezzaI'm a mental health practitioner and specialise in FND. I also have ms
Check your thyroid glands and ask for a full pannel thyroid test doctors only check TSH make sure you tell them you want to do the T3 T4. Because your TSH Might be normal but T3 T4 maybe low. The thyroid gland is a battery to all your organs if not working properly nothing in your body will work as it should.
And ask for your blood tests and leave it with you
Same symptoms. They missed my thyroid cancer. Had my thyroid removed, symptoms are worse and now they have discovered Crohn's.
Great info! I was sent to ENT for vertigo. MRI of my inner ear had an incidental finding of brain lessons. ENT sent me to neuro, who ran with it. Every test they threw at me was positive. I had a confirmed DX of MS within 2wks. Yay me! 🤦♀️
Same here to be honest, feel quite lucky for it being so quick
It took 8 years to get a diagnosis. The first neuro I saw told me that he thought it might be MS, and then said he would see me in a year. 😒
Exactly how I was diagnosed too. I also had severe inner ear pain that was unexplained. I saw two different ENT/neuros at different places to find someone that would pursue answers though. One was a resident doctor that was not being adequately supervised by an attending doctor.
@@lararose9106 I have MS.. and getting random bad vertigo .. ent said not ear but ms can cause central nervous system vertigo
I remember after my first two MRI, my regular doctors just said it's mild prolapsed disc. 2 years later, I was at a main hospital, paralyzed waist down, in pain - after I was sent for MRI in-patient & radiologists saw my MRI and was alarmed and immediately contacted my neurologist, that was when my neurologist came in and got the story of the history of what had been happening for years before to correlate with the MRI findings. So this really takes me back to the time when I was diagnosed.
Selam sister!
Did you got diagnosed with MS? I got recently diagnosed with RRMS.
I have Migraine, Exploding head syndrome, Cervical instability, Neuropathy and Eds. I experienced MS hug which was super severe. My neurologist in Denver said NOP, it is not MS. God bless your life and knowledge Dr. Boster❤
👍🏻
What does NOP mean? Thanks ❤
Yooo I have the same thing. If you get diagnosed with something please come back and comment it 😊
I saw a neurologist and went with the intentions of seeing if i have MS, I was and still having major cog fog. They never did the contrast dye mri. Instead, he talked about losing his wife recently to brain cancer, that was sad, and then sent me to get a psych eval. Well here I am 3 yrs later, and now I have bladder incontinence and retention. I've had dismotility of my esophagus for years now. I have IBS with constipation. In the past I've had vision issues that would come and go. I've been in glasses since I was 5. In my late teens I started having pain in the back of my eyes, I had Mononucleosis as a teen, and Scarlet Fever. I always lacked sleep as a kid, the school noticed, but my mom never let me sleep or take naps as a teen. At 53 yrs old now, I've had many of the MS symptoms. Where do I go now?
Sounds like a malpractice lawsuit, these doctors need to stop getting away with calling patients crazy, it’s 2023 ffs. I had a male doctor do that to me and I reported him to the medical board.
Check your thyroid do a full pannel blood test not just TSH which doctor will only check tell him you want to do the T3 T4 too. Also check your vitam B12 and vitamin D. Get checked for Lyme s disease which can mimic MS
I don't know but sounds like we are on same path in circles.
I have a similar experience..52..had symptoms for years now..told my mom that I thought I had MS..due to the way heat affected me and all the weird tingles..anyway..I was told same as you..may need to see a psychiatrist ..which was very annoying.
Great video Dr B! I had mild remitting MS symptoms for 16 years before a formal diagnosis. Unfortunately the diagnostic journey began when my vision declined to 20/200 in one eye and never recovered. Since my only major symptom was vision loss and my MRI showed non active brain and spinal lesions, my MS neuro sent me for a spinal tap to confirm which it did. I had vision problems for many years before then along with annual eye exams that didn’t show any problems. I was told multiple times that my recurring blurry and cloudy vision issues were allergies until I wasn’t able to read an eye chart.
This is so reassuring to me. I have blurry vision all the time and eclipses in field of vision but the eye doctor can’t fine a single thing wrong. 😑 maybe with time then. I am glad you finally got a diagnosis
Did you have Optic neuritis? Did your vision decreased this drastically from one day to another?
I needed to hear this so badly!! What you do for us is priceless! Thank you!!
I have been watching you since my own limbo starting back in 2020. Started with optic neuritis, positive for oligoclonal bands in CF, and lesions but not quite enough or in the right spots to confirm diagnosis. Yearly MRIs all stable until my early September MRI this year where I officially hit that last criteria box. Thankfully the new spot is very small with seemingly no symptoms from it. It’s easy to feel lost in what I called “The Gray Area” but your videos have been very helpful and extremely reassuring while leading up to the actual diagnosis. Thank you for sharing your knowledge with us.
Same boat what do they think it may be? I’ve been dx since 2006 though no lesions o bands in csf
I’ve been in limbo since 2015…6 MRIs, 5 neurologists, optic neuritis…too many issues to count. Tomorrow I head back to neurologist after a year of cancer surgery and treatment, which made everything worse. It’s exhausting on a daily basis yet the search for help and diagnosis takes everything to a different level. I truly wish I could meet a doctor as compassionate and knowledgeable about MS…the “gray area” truly leaves a grey haze on daily life.
Since all this time; what was your vitamin D level and how did your cancer occurred, is it related to suppressing your immune.
I am currently going through the diagnostic process. For years, I’ve been looking up random symptoms as they came up and all of these symptoms were directly related to having an upper motor neuron disorder. Mind you it wasn’t just the common symptoms I was having, the one that actually made me realise it was MS were the nummular headaches, which are a unique type of headache almost only found in MS patients. My electromyography was fine but the doctor doing the test noticed I had clonus not just on the left side leg and arm, but also in my right leg. This was not written down and I had to relay this information to my doctor myself not even knowing how to spell it. My brain MRI came back “unremarkable” even though I have every signature symptom of MS and even some elusive ones. I have yet to hear anything more on the matter. I got a neurology referral that will be processing for the next eight months, meanwhile my left side is fully symptomatic and worsening, and my right leg has begun showing signs. I switched from tennis to pickleball and my legs still give out under me (because of drop foot or heat induced weakness) if I get just a little overheated. My tremor and fatigue continue to worsen to the point that I can’t write or stay awake even on ADHD meds. I am only in my early twenties, I don’t have the time or money to play the waiting game. I know what I have and I tested positive for all but one of the medical criteria. I mean not everyone with a condition will have the same presentation. Getting the official diagnosis sooner is important because it would allow me to get treatment and accommodations that I now need because of my worsening condition. It is unfair that I cannot offer a medical explanation for my debilitating symptoms in my work and academic environments.
A brilliant video Dr. Boster! So many of us have a long diagnosis story and it is so helpful to hear diagnosis criteria, what else it could be, and what we can do in the mean time. You are a gem! 😊
My diagnostic story is quite unique, I never bothered with the small symptoms, signs of MS, it wasn't until I was watching Sleepy Hollow by Tim Burton and I saw two headless horseman coming at me I knew that wasn't right, Tim Burton is odd, but not that odd, the next day I went to the ER all blood test, heart test what ever came back normal, they sent me to a Neurologist and within 15 minutes of listening to my history he smiled and said, I know what's wrong, let's get an MRI. Hasn't had one yet. The next day I kept missing light switches on my left, I called the Neurologist, he told me to go to the hospital, I walked in with no help, by noon I was paralyzed on my left, could not stand or even walk on my own. After the MRI and Lumbar Tap. He told me I have MS. That was 23 years ago. The doctors at the PT hospital I went to, to relearn how to walk told me I would be in a wheelchair in 10years, like I said that was over twenty years ago. I think I'm doing well because I have docs like Aaron Booster and my first Neurologist Glenn Robbins!!!
wait your saying it made you hallucinate? my dad had ms and was abusive to aniamls often. in your opinion could that be the connection? also glad you are doing well!
Im following you.. im in that limbo. Had a stroke in my spinal cord in November 22 and by chance found lessions in my brain mri. Im experiencing scary symptoms.
I am now using a suprapubic catheter, have incontinence. I havent been able to walk without a wheely walker. I suffer migraines and my life has changed 180 degrees. Im sad and needing answers. I want my old body back 😢
I understand you. My life also changed within months and I also need a wheely walker, even at home
@@thevcountdown9824 I am sorry you are going through this.. I hope we find the answers we need 🙏 hugs
My Neurologist was pretty convinced I had MS. Over a year and lots of tests later, I received a diagnosis of PLS ( a form of motor neurone disease. It really can take a long time to uncover what’s really going on, as so many symptoms overlap with other conditions. Don’t give up until you find out!❤
The way you break down a complex challenge with effective solutions and genuine concern is incredible.
Thank you Doc
Be 🙏 well
Glad it was helpful!
TY Dr. Boster I appreciate your candidness. I've been dealing with issues for over 20+ years trying to find answers only to be getting worse. I'm now determined to get answers, maybe not. I want to live out the rest of my life with atleast some quality to it. I don't want to be a heavy burden to my husband & daughters. I see a Neurologist tomorrow to try to get some answers. Maybe it's not MS, but some other form of neurological disorder. However, I see degenerative issues my Mother had the last 15-20 years of her life she never addressed medically, that I'm now seeing in mine. Now two of my daughters are dealing with similar issues in theirs. I need answers as well as I need the answers for them. Thank you and God bless you!
Ten years of Brain MRIs showing lesions, ALMOST COMICAL DOUBLE VISION, 4th nerve palsy, peripheral neuropathy, ataxia with increasingly nasty balance issues, painful eyes (like someone was PUSHING them out of my socket from behind the orbits!), overwhelming fatigue, increasingly painful muscle spasms in my legs and torso (my then-primary told me "just drink quinine water!"), memory issues (like forgetting where I was going while driving on the highway , then remembering but had NO idea the route there!), brain fog, and myriad other issues...lots of testing, like evoked potential, testing for CAUDSIL and other disorders that were thankfully NEGATIVE.
TEN YEARS and NO definitive diagnosis! I left that medical group. Now at 75, I'm told by my new respected neurologist that it's MS, but he is hesitant to start me on Ocrevus (due to my age and nasty potential side effects), so he refers me to MS neurology specialist at major medical center in NYC. She examines me and views my copious MRIs (over a dozen, including thoracic and cervical) and she smiles and states "You do NOT have MS!" And yet that news was only vaguely welcomed...because if not MS, then WHAT? And so started a now 4 month journey of a plethora of bloodwork/testing, investigative genetic testing, and presently looking at vascular inflammatory connection....I am DRAINED, both EMOTIONALLY AND PSYCHOLOGICALLY. Genetic testing and copious symptoms point to leukodystrophy as well (yes, I researched that and info was distressing)...and while all of this is being played out, my brain continues demyelinating, body has become more affected, and I am at the point where I wish I could just not wake up from my barely 3 to 4 hrs of sleep that I generally manage nightly. Have had no headaches but "BRAIN PAIN" and other scary symptoms. I have a video visit tomorrow, with her and her colleague. At this point, I'm not feeling very hopeful but willing to listen to what they have to say.
Yes, Dr. Boster, life is hell when caught in this limbo.😱
😔😔😔😔
When I asked a neurologist to please review my brain MRI h told me "NO, not MS," when I asked what could be causing my symptoms, the arrogant prick put his hand to his neck and said " I only work from here up"indicating the head, He brushed hs hands together to indicate he was washing his hands and walked out of the exam while I was still filling out my symptoms list on my admittance as if I were not a person, and he only agreed to look at my MRI. He never returned to the exam. I hate doctors
Unfortunately so so so many of us have had similar experiences. I have hesitated to go to doctors with my symptoms because I have been told more than once that my symptoms might just be my subconscious attempt to get more attention from my husband. I also look healthy, and I've had to explain that as well. If I'm so sick, how come i look okay?? As if I'm faking cancer or something. I hate doctors too.
I was told I might need a psychiatrist , someone to talk to.
Are u found ur answer?? Is MS or not??
Some doctors .Yet it was my GP who knew what it was. His father is an MS patient. But honestly...everyDoctor I worked with has been great
i am in exactly this limbo situation, thankyou for your helpful video
Wow, if I'd had you as my neurologists three years ago, I wouldn't now feel traumatized at the thought of ever seeing a neurologist again!
I had neurological problems that turned out to be a side effect of, what turned out to be an aggressive form of NHL (T cell lymphoma). The neurologist was clearly bored of my symptoms and so diagnosed me with FND. Once I had that on the top of my medical chart, no doctor wanted to investigate anything. I believed I was dying... I was dying and nobody would listen to me, until I became very obviously seriously ill.
This has been helpful. I'm going on three years with neurological symptoms, but no answers. It's frustrating to be in limbo, and hard to keep up the hope that I will find out what's wrong.
Thank you for this video
So nice of you
I would try and set up a appointment with you if you weren't so far away. I live in Tennessee. I have neuropathy and weakness on right side. I got a f on the MRI 😳 big time. I go back to the neurologist tomorrow.
Another great video Dr. Boster! Thanks
This has me sobbing. Thank you so much!
Why? What’s wrong
Thank you so much for all you do dr B! This just happened to me last week w my ms dr....i am 2 weeks away from my next octevus infusion, and my fatigue has returned profoundly. My ms dr says it has nothing to do with my ms....even though its the same fatigue that brought me to the ER (along w other symptoms), which led to my ms dx. He says that ms doesn't cause fatigue, and I beg to differ. It is very frustrating. Thanks again dr B for touching on this topic....Absolutely LOVE your videos and your dedication to helping others. You are Amazing!🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥
Sounds like your doc needs to return to school!
Hey Katie, that is a very typical experience of patients on ocrevus. It is called "the crap gap". I've been on ocrevus for three years now. I learned from other patients that ocrevus can be given every 5 months instead of every 6 months. I will begin a new DMT in December. It is a monoclonal antibody like ocrevus. It is called Kesimpta. It is a monthly dose that is sub q injected that we can do at home ourselves - so no 4-5 hours at the infusion center. If it is possible for you, consider a new neurologist. Wishing you well
I was in limbo for 2.5 years because im an atypical case of MS but finally diagnosed with MS in 2016
So happy you touched on this topic, as many do come with these questions especially in the pre diagnosis stage ( or after Dr Google consult)- i will definitely recommend and share this great information.
Have a great day Doc,
#StrongetTogether
Had a sports injury in 2017. Was told I had a mild concussion. Said my brain actually moved during jumping rope on the concrete floor. Had some eye issues and neck issues but other than that was fine. However, now strange symptoms are showing up that are MS related Finally got untangled from the medical web and decided to go out on my own with holistic practitioners. It seems to be doing just fine I love this video. Thank you so much for being a bright light amongst the dark.
I had post viral syndrome and had many neurological symptoms. I got an mri first ER visit. Wasn’t told until later there were spots on my brain. Once out of the hospital migraines got worse and more frequent with more spots on the next mri and then on the third mri too. MRI scan reads that I have early signs of MS, I also have had mono 3 times.
Neurologist says I don’t have any signs of MS. So crazy.
Appreciated! Brain MRI was “borderline undiagnosable” due to the huge artefact caused by my cochlear implant, yet my doctors are still leaning away from suspecting MS. But no one knows yet why I’m having visual symptoms, balance issues, etc. I’m getting the visual potential test at some point soon, but otherwise everything’s at a standstill for now.this is super helpful in making me feel more reassured that I’m not just viewed as making things up while also giving more grace to the fact that everyone is scratching their heads right now.
Hey doc, thanx for making MS so simple to understand. I have been diagnosed ms in 2016
Kakali from assam(India)
Most welcome!
Hey how’s you doing, im also from india 🇮🇳
Dr. Boster,
Fabulous Video!
I have been an MS Support Group Leader in Boynton Beach, FL for many years. I was Originally Diagnosed with MS while living in Boston in the 1990’s. Still maintain contact with many of the original Group Members when we had Monthly Meetings at the Library in Boynton Beach until COVID changed everything.
Currently we meet on Line every month with a smaller group.
I am hoping to eventually have Live Meetings again which were far superior to these On Line Meetings.
I would love to show your Great Video
To all of the Support Group Members
Eliot Reinstein
MS Support Group Leader
Boynton Beach, FL
I have every up there and down there symptom but 2 pair mirror OCB in the CSF and Serum. I have no hope left because I saw Rheumatology and was Negative for Lupus and I need a diagnosis to be able to ask for what I need. Without a diagnosis you can't ask for a cane or any help when you can't comprehemd paperwork, when you struggle to drive, or lock yourself out of your house and parents like moms need to make sure they are fine when they have their kid's schedule to follow and there are no exceptions if they have a deadline and you aren't well enough to make sense and help with schoolwork or fill out their documents. I can't walk or read. I now use the wrong form of words, misspell, say my sentences out of order and say words out of order and I have moments where I struggle to talk like I'm trapped in my brain. I never used to mix up different forms of words or forget how to spell. When I type I type the letter next to the one I want because of weakness and double vision. I drop things and miss like a drunk person when I go to pick them up and run into doorframes. I closed my trunk on my nose and broke a $300 pair of glasses. No one ever asks me if I have to go to the bathroom a million times a day/night or if my muscles down there work and all of them do the oppositive of what they are supposed to do. I wanted to become a pediatric nurse but because I'm not able right now now one cares that my life may always be in the future while I age and I'm not even 30 yet
Hey Dr B. I was diagnosed with MS Remitting-Relapsing earlier this year after I was admitted in hospital. All the tests you mentioned were done and the conclusion was MS. In 2014 the vision in my right eye became blurry, MRI was done...White spots on brain, was told then not MS but CIS. Over the years the numbness in fingers toes body would increase then vanish, but then pain in my back increased and effected my spine... my walk...some days better than others, I'm just trying to keep on top of my nutrition etc.❤
I really needed this video, just got my LP tests results back and it was normal. I have several symptoms of MS and several lesions on my brain in the most common areas (juxtacortical and periventricular) U-fiber and more, I was told to repeat MRI in a year or if I have a NEW symptom. This is very frustrating, neurologist says she doesn’t know what wrong with me 😢
I feel like doctors think I’m crazy and with the normal LP the neurologist has washed her hands of me. I feel extremely defeated.
This happened to me - after a year I had more MRIs (positive) and a second lumbar puncture (still negative) and got my diagnosis. It was really hard having to wait.
@@emmabrooker166 really!?! Thank you for sharing this with me!! I feel I’m alone sometimes and no one understands!! My primary doctor said I need a second opinion and is sending me to another neurologist.
Oh I was sent to a psychiatrist and psychologist when the first neurologist couldn’t figure things out and he sent me over to another neurologist. So, now I’m working with him….
This was so useful, I am going through this at the moment. You said exactly what my neurologist said but in a much nicer way and explained it. When I asked what else it could be he just shrugged and I left feeling very unsupported and not reassured at all. Just waiting for a repeat MRI. Im convinced now its not MS but I cant switch my brain off untill my next scan is clear.
😮 You have cleared up more than any neurologist ive ever met. Also mentioning Neuro optimologist was helpful. Mine is going crazy trying to figure out whats going on with my eye. A neuro op is who I need to see. Thank you so much your channel rocks!!
This is where I am in my journey for diagnosis. I have neurological symptoms but not diagnosis just follow up appointments but I still live with tremors, cog fog, eye issues and left sided weakness with low muscle activation. I have ended up using RUclips Physical Therapy videos to help with the weakness on my own.
You described my situation to a T. I feel calmer. I can’t get in to a neurologist for 3 more months. Thank you.
Thank you for this very informative video. My husband will be seeing a neurologist tomorrow. Your videos have been very helpful to both myself and my husband to prepare for the neurology appointment. God Bless you and your practice Doctor B.
The best doc I’ve ever seen
Thank you for this valuable information. I have neurological symptoms and lesions in the pons, but I don’t think I have MS. My orthopedic surgeon doesn’t believe that my c-spine issues are the cause of my neurological deficits, but I do. The saga continues. 🙂
Thank you so much for this I had 3 lumbar punctures multiple MRI'S and tests as scan all looked atypical of MS . Then when they diagnosed me and I asked why do u think it is MS now? I was told I needed to go to a psychologist to come to terms with my diagnosis! 17 months on Tysabri feeling yucky and new enhancing lesions. After seeing your red flag vids I asked to transfer to new neuro. Had to come off Tysabri waiting for appt with the new neuro. New neuro said no need for more meds, watch and wait approach. See u in a year. Off it for 9 months and never better. Do I still need to worry about rebound?
I should mention that one of lumbar punctures showed up viral encephalitis which explained the excruciating headache, seizures, vomiting, light sensitivity and my total confusion. Sadly I started the treatment for it really late so the cognitive function is permanent. 3 yrs on I am physically better now off the Tysabri but still have severe cognitive problems. The new white spots were result of APS and high blood pressure
Great video and very helpful!
My MRIs are clear of lesion, but I have symptoms which are very much like in MS. The reason seems to be wear and tear in spine; both in neck and lumbar region. I have left side weakness (like line drawn in the middle of my body+face) and pulging disk in the lower back causes saddle area numbness and weakness. I am suffering from serious fatigue, heat intolerance, flushing and malaise episodes (with blood circulation issues?). I have episodes of "silent" migraine where I suffer from double vision 2-3 hours. +++other symptoms.
This combo looks so much like MS that it is hard not to be suspicious of it regardless of the clear MRIs. It is good to know that this can also be the situation and in that case what should happen. And that the limbo of not having clear diagnosis, is still something to be taking a note off!
Also, I realised some time ago that having heat intolerance can happen in any situation effecting the nervous system. So even that I do not have MS, my life can look pretty much the same than somebody who has it. And that symptoms can be treated regardless of not having definitive diagnosis!
Thank you so much! Being in the "limbo" of not having diagnosis is literally nerve wrecking! And any help, information and validation towards it is extremely helpful for a wide audience! 💗💗💗
Mulla samat mutta selkää ei oo vielä katottu : ) tsemppiä, oon ite ihan rikki tän tilanteen kanssa.
The problem with waiting so long for a dx is that is what is frustrating or depressing. Doctors keep saying you're depressed but it's mostly just dealing with Doctors for me. Just tell me what's wrong without taking all my money. I still owe 4k dollars for MRIs and that's with insurance. I'm not really depressed but I need to know why I have all these symptoms without a dx. My MRIs were horrible because my foot kept twitching too.
I'm having the exact same issue as you. Got 4 MRIs done (head, neck, upper back, and lower back) and they all came clear. I have peroneal neuropathy on my left side (confirmed by EMG needle test) and difficulties talking and swallowing on left side. My lips are also more droopy on the left side. Also, I have severe insomnia now, always tired, heat intolerance, memory issues, and unstable emotional control.
So I don't know where I stand now... I will see my neurologist in a couple of days. I was almost certain it's MS.
But I am very scared of the possibility of ALS 😢
@@blahgoose3237hi did you get sorted, hope you are OK now.
It takes a village but without insurance you are on your own. I needed an MRI, If I had the thousands of dollars they wanted as my insurance declined, I would likely have a diagnosis, My insurance insisted I get an EMG first. That took 7 months to schedule >:( I'm 56 and will likely not make 60 because healthcare is for the wealthy and health I don't care is for the rest of us
my symptoms started in 2011 after a massive, wrong-threated EBV infection. I was diagnosed with Fibromyalgia, CFS, Depression..anything you can think of. Then finally some doctor was brave enough to do an MRI and my brain hat several big lesions. I got, after a few more tests, the diagnosis of MS. And instead of doing something, they put me on lifetime retirement at age 35. Nothing ever happend since. I moved from germany to Belgium three years ago, everthing exploded last year and I have an apponyment with areally good specialist soon. Problem is, I have to go trough every single thing all over again as the german doctors refuse to send my medical history..very, very frustrating 😢
My doctor's tried to put me out on disability when I was 28. I said NO. WORKING UNTIL I WAS 62. THE heat in our High Desert valley wipes me out. I would be hospitalized 3-5 times each summer. I finally got them to do my IVs at home. HATE THE HEAT
Your channel is amazing. I love it. Just a quick question for you..
I had an mri of my brain that showed non specific white matter lesions, mri of spine clear but lumbar puncture came back with Ogliclonal bands.
What is literally going on?
So glad I’ve found you. I’ve had a cervical fusion years ago due to stenosis, not successful and still in chronic pain. I’ve now got electric shocks in the other arm and leg when I put my chin to my chest, totally different feeling to my stenosis symptoms. I’m going to see my GP tomorrow.
Thanks for all your info. I’m daughter 48 has had 2 previous MRI and having 2 more MRI in November to help confirm what’s happening with her. She had pain and numbness 2 wks. ago after 8-5 visit to the emergency ward she received meds. that are doing their job along with going for physio.
Very well explained! Thank you doc Boster. Hugs 🫂 to you and your family. You are awesome! Thank you!
Thank you kindly
Nice video. Sometimes, radiology reports which say "cannot rule out demyelination" are simply inappropriate, and when I review the films, the white matter changes are clearly benign "unidentified bright objects" (UBOs) or leukoariosis (vascular changes). Other times, the findings are ambiguous which is where careful history, examination, and sometimes CSF can help. One thing which is very hard for people to believe is that a very high percentage in the general population will have some type of white matter change on MRI of the brain. In an ambiguous case, I personally would favor follow up visits and MRI scans rather than doing tests like OCT/VEP/CSF. In a clear case of "not MS," I offer confident reassurance. I will say things like, "Your risk of MS is now less than mine because you have made it to age XX without any brain lesions typical of the disease."
Would it be considered normal or average for someone 50 to have one white spot then a year later have 4 and one of them grew from 3mm to 5mm???
Thanks for the video Dr. Boster.
My pleasure!
Thank you @AaronBosterMD for this video. I seen a neurologist a few weeks ago. Checking me for MS, stiff person disease etc etc. The neuro was really excited about my brain scan. He said your brain is so perfect, Especially because of my age & health with all kinds of physical problems. The neuro throwed all my symptoms Under the umbrella of Fibro. I have been almost bedridden for 13yrs. My muscles stay engaged super tight everywhere everyday There is no break of the Chronic Pain for me. It causes me to have total back pain & spasms can go from lower back to full body spasms. They last around 5 hrs or longer. I just do not know where to go anymore. I am thinking Fibro is a big crock of Bull & Drs just put you there to get rid of me.
Hi from Israel I wish that every Ms doctor will be like you now it it is only a dream... God bless you
Hi Dr Boster, you seem to be the exact person that I am looking for.
I went to bed and woke up on a stretcher in 1995 to be told that I have MS in less than a week.
I'm disabled in a wheelchair all day long
Try carnivore diet, it's helping people with MS.
Thank you Dr Boster for your massively helpful educating videos. They show you have qualities I can't find here in OKC, OK. You have an awesome caring & compassionate way with your patients. I wish you were here. I've had all kinds of neurological symptoms for the last 2 yrs that I think may be MS & why I haven't recovered from my fight with the Delta 2 yrs ago, which left me disabled. Now a brain mri has found a 7 mm aneurysm on my paraopthalmic artery. Could that be the cause of my symptoms? I am overwhelmed & frightened. This neurologist won't even look at the scans till tomorrow because he's not scheduled to work till then. I've been very upset since I found out last Thursday afternoon. Lord, I wish you were my neurologist!!!
Your videos are so very helpful💚🇬🇧🌱 thank you
You make me feel positive with your knowledge of MS, thank you so much.😊
My pleasure 😊
I was diagnosed with MS June 2022 when I had a TIA. The MS totally explained the bladder, bowels, tingling hands and feet, falling, balance issues, migraines, and on and off sight problems. I'm still figuring out when a flare up.
How can I give it 10 thumbs up?! Really interesting stuff in the video!
Thank you for this!
Hi, I’m from the UK. Wow, this is the best video I’ve found on RUclips regarding white matter hyperintensities/ms/cognitive decline. I’m going through this process right now. Thank you so much for giving us more in depth information. 😊
I’ve seen 4 neurologists so far. I’ve been ridiculed by one (literally) dismissed by one and so on. I’m going blind (Optic neuropathy) rapidly, depressed (being treated) and I’ve given up ever (being dx. If anyone knows of a kind doctor between Chicago and Madison or even Detroit, I can get there. This is true he’ll.
Reach someone man contact someone go to a neurologist do an mri do smth abt it , u cant let urself down u got this .
Wonderful video. Thank you!
Thank you for this video. My wife has some weakness in her leg that comes and goes. They did find a spot, but her follow up MRIs showed no problems on her spine. We are going for a nerve conduction test, and of course, the possibility of ALS. I am also encouraging her to get physical therapy, as she sits a lot is overweight, and it could be some other sort of physical cause, including sleeping glutes. Her conduction test isn't until December, and I am freaking out a bit, but this video has helped me put things in context.
How it go
What about the NFL test? My neurologist ordered that blood test instead of spinal tap to confirm MRI findings/MS diagnosis.
Thank you so very much xx I wish we had you in Australia
Great video Aaron. I love to see doctor’s sharing their knowledge via RUclips (or other social media), moreso when it is done with passion and in an engaging manner 👍.
I have an inherited cerebral small vessel disease in which demyelination is a feature and in which characteristic white matter lesions are apparent on MRI. It is called CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy). I know that many people with CADASIL have, in the past, been misdiagnosed with MS. And, rarely, some people have both CADASIL and MS.
I’m curious to know if you have had patients who have subsequently been diagnosed with CADASIL (via a blood test checking for a Notch3 mutation, of which there are several hundred known variants)?
Keep up the great work.
Thank you for this explanation. It always helps to know more.
You are welcome!
Amazing content ! Thank you so much for your time, doctor.
Loved the video Dr. B… Sounded like part of our discussion a few weeks back!
I’m in limbo. Your videos have been so important on my journey. This year I’ve been dealing with breast cancer and it has aggravated the “MS” symptoms. I’m wondering if the flares have increased due to aromatase inhibitors post mastectomy.
OMG I wish I could come see you. In Denmark public health care is free, whereas a referral to a private neurologist has to go through either the hospital or your GP, neither of them being overly willing to make a referral. I've been in limbo land, experiencing a variety of symptoms for the past 18 mo. (poor balance, loss of periferyl vision, loss of bladder and bowl control, numbness in feet, raynauds in hands, lhermit sign, spasticity in both arms and legs, and periods with massive brain fog) My MRI came back negative for MS in oct 22 and jan 23 as did spinal fluid tests. For now my GP just wants to wait and see as he says, that 4 or more "flair-like episodes" (whatever thst is) in 12 mo will get me a referral. No treatment in the meantime😢
I’m there. My toes, feet, ankles and legs up to my knees are numb 24/7. Then my finger tips up to my elbows are numb. I have been diagnosed with Idiopathic Peripheral Neuropathy. I am exhausted 24/7. I fall asleep constantly. Just recently my right eye is painful and I get double vision. It comes and goes. This have been going on for four years. I sometimes will be talking and forget a word. It’s weird. Just a word.
Yes, just a word .. and then I can't remember any words to describe the word I want to say... Like the entire definition is gone. Oh, and forgot where my stepmom has been living for 15 years .. literally did 4 u turns up and down the road before I remembered
This is where I am right now. No ms spot on mri but neurological issues everyday. Now what ? They say parenthesis? They don’t know why!!! Now what ? These are real symptoms. Stuck in rural Montana. Help❤
You are not alone. Negative MRI… many symptoms, no one knows what’s going on.
@@joycedennis7227same….im so frustrated
I follow you and learn alot about my MS journey. I am about to start 2nd phase of Mavenclad, but my alc is 420, so we are going to have to wait till I get about 700. My MS doctor knows you (Dr. Berkovich).. I fully trust her, and up my game by watching you. Thank you.
Wow, what a great Dr!!! This video helped me so much. Just finished all my tests & will know results in a couple of weeks. Thank you!
Told I don’t have MS but I have all of the symptoms. Blood results aren’t back yet. MRI without dye showed transverse myelitis and with dye it said artifact movement didn’t give a clear image, I fell asleep in the machine…there’s spots on the brain MRI. Cognitive impairment, left leg gets weak and I get intense pain, severe constipation but CT said I wasn’t constipated, I definitely couldn’t go for over a week and needed to take 10 senokot tablets to go, I get bad insomnia, five days was my longest stretch. I am not a lazy person, was always go go, go and now I’m in bed all of the time. Had cervical laminectomy with fusion for severe myelomylacia, I randomly just drop my coffee cup, I have had bladder issues, the cognitive issues have made me feel like I’m getting Alzheimer’s, been feeling overly stressed (a lot actually going on to justify that), severe mood changes. Just want to know what the heck is going on. I don’t want it to be MS just want my life back! I use to walk 16km a day, home was spotless, loved cooking, cleaning and caring for my family.
It could be functional neurological disorder. Look it up. It is real physical symptoms but it won’t show up on any MRI scans, it can get better as well in time and completely go away.
Thanks for so much info ,I actually feel more comfortable...it doesn't have to be MS 😊
My neuro diagnosed me and I was sorta in denial until my OD was like, gently trying to tell me my symptoms and OCT were concerning and I should speak with a neuro. It was like, two days after I found out and I was like Oh yeah, I forgot I have MS now 😭😭😭
Dr Aron Boster. Is a gentleman, the way he speaks and cares about people is amazing, and thoughtful,the way he approaches ailments not brushing them off , like most. Drs , At least he care’s means a lot Wish I lived near him 🫶🫶🫶❤️❤️🙏🏻😘🥰💙
I had this yesterday! 💚🇬🇧🌱 Dr said isn't MS awaiting CT scan results...
Thank you. Currently in limbo with my husband. He has a mild case of ON, and very 2 tiny spots were found in the MRI, I think one in the brain and another in the neck. But the mri came inconclusive and required further clarification.
He did LP, it will take a month to get the full result.
Thank you for your wonderful video. Very informative and nicely done. 🙏🏻
THIS was helpful. I'm 66, having the balance, numbness, "zaps", and other symptoms. My eyes "go out" at times. Back when I was about 28, the docs thought I might have MS and they did the MRI but it wasn't conclusive. They did the lumbar punch (which to this day I am terrified of) and they said "You have the markers in your spinal fluid for MS." I have had stuff off and on, balance mainly, and the zaps, and pain. We've got another diagnosis of fibro but that is the pain aspect and not the other stuff.
I'm going to a neurologist again in January and am terrified they're going to say it's not MS but it's not anything else either. We DO have something going on here, and I need to know what it is. Or give whatever it is a name so I can just go on living for the 20 or so years I have left without freaking out every time I feel a zap in my big toe or my elbow, my eyes don't work, or I lose my balance and fall again.
I hope this guy is as good, and as kind, as you seem to be.
Highly unlikely and not much you can do about it (surgeries are risky and often not a solution), but have you been evaluated for cervical instability or cord compression?
A lot of those tests were on me because I didn’t have a lot of those things because I have TMS and it’s very rare
First neurologist I went to said he thought I had MS, and scheduled an mri of the optical nerves. When the report came back, he said “Nope, not MS, you need a good psych exam”. So, my PC doc scheduled a brain MRI, and yep, very clearly MS.
So just before years end my father would die of cancer giving me time with a nurse to talk about what was happening. We would discuss my Labs which I now keep on a dedicated tablet. I was treated and released from 3 ER's with diagnosis of vomiting with no cause and dehydration. In reality I had experienced HHS, Anion Gap acidosis depleting me of nutrients, Vitamin d3(25) among them. My brains were progressively worse. After my dad passed (cancer) my body would freak landing me in the ER again. This time armed with The nurses information I explained this is not vomiting causing dehydration it is acidic blood causing vomiting. Here is the kicker my blood pressure would fluctuate wildly 100 point swings for "no" reason. I would demonstrate, The nurse came in to check my bp one night, it was 200/110, he was alarmed. So I relaxed, and it dropped 160/90, and he was baffled. I said watch this and I got out of the bed and stood. My pressure would again drop, this time to near normal. it was suspected at one time I may have POTS, i was proving it. Now uninsured, with the knowledge I have SFN an MGUS and likely POTS, I sit with no medical access awaiting a disability determination which is expected to take 9 more months in Texas where medicaid is not available for men. But for you Dr Boster, I would likely be dead. My doctor's "See you in 90 days' would have killed me by now. Currently I am working on supplemented nutrition and mild exercise to keep me out of the ER. My clearheaded assessment would be nerve damage in my neck and spine including a severely herniated C2/C3 disk and degenerating thoracic disks and sciatica causing all my nerve damage. The MRI My insurance refused 2 years ago would have shown, but killing us is easier than treating us. Thanks for all you do and i hope my story will help you or a patient somehow
Thank you again for another great video Dr. Boster. But I am wondering in limbo land if there can be a clear brain and cervical spine mri but if possible can there be lesions on the thoracic spine or lower to suggest ms? I am struggling to get Answers and I'll be happy if it isn't MS but...I want clear answers...to rule it out entirely would make my heart and mind happy. But if there is no mri of the mid and lower spine...how can we know there are no damages. Waiting not so patiently for an EMG. I am losing my mobility. I am using walking aids struggling to keep my day job and know in the next month I will have to give in and leave my job because I just won't be able to get around in the snow and ice. My symptoms covers 5 pages long and not only my legs are giving out, my arms are losing strength with the simplest activity. I don't have access to a Neurologist, most definitely no MS Neurologist where I live the best I can get is an internal specialist. No one has even asked me to walk or have done any of the physical or cognitive tests with me like you suggests. I know you try to read all the comments and I am so thankful for your videos and live streams. I have learned a lot even if it turns out I don't have MS. If money was no option, I'd be making arrangements to some see you in person. I am afraid the longer I go without diagnosis and treatments that my symptoms will become permanent. I only just turned 50 and I'm in worse shape than my 95 year old hone care client. I'll soon have to leave my home care job to have a home care worker of my own. This is sad and frustrating.
Thank you Dr. Boster!
A great video full of information and hope. I found a great physical therapist that found all my weaknesses and helped me improve to my best. My vestibular system was way worse than I thought but with exercises, it has improved. She helped me improve my gait with a walker. I had a memory test done by social security that found my weaknesses in cognition. Where to go now to improve in cognition?
Im in Limbo land, Started with severe Lyme in 2007, shingles 11xs, mono nearly killed me in the hospital for 38 days, iced down 2xs. Im on Tizanidine, I have so many of the MS symptoms. The best thing that has helped is Medical Medium protocol. No scarring on my brain.
You’ve got a good buddy there.
Thank you Dr Boster, this is an awesome video- I know many people who feel at a loss when they don’t get an MS diagnosis. Relief but also a feeling of - well what now? Why do I have these symptoms? Is it all in my head? Did they miss something? It’s an uncomfortable feeling. So appreciate you 🔥🔥💖🔥🔥
Multiple T2W/FLAIR hyperintensities are noted in bilateral deep periventricular white matter and centrum semiovale region.
Some of lesion are perpendicular to calloseptal interface. No DWI restriction is seen. No enhancing lesion is seen.
I wish there was someone like you that could do this with myasthenia gravis! I have the clinical symptoms of MG, but my MRI and EMG came back normal and so the doctor cannot give me a diagnosis. But my life has been significantly impacted down to just normal daily habits like brushing mh hair. 😢
I've been born with hydrocephalus.. then developed Epilepsy.. chronic migraines..increased muscle tone.. chronic migraines..then diagnosed with Dystonia (focal) then progressed to full body.. Dysphonia.. Dysphagia..I'm mute..hypoxia.. coughing blood currently.. BMI 14...cataxia.. carpal tunnel syndrome..ataxia..multiple vision issues like eye floaters and double vision... cognitive difficulties.. losing my language to the point I'm talking in English because I'm speaking English it's not my mother tounge..major depression..anxiety ..anger issues...due to my diseases then..they said MiTo disease ..
Also not a boring diagnosis like Dr House says..