It's NOT MS! What happens next?
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- Опубликовано: 1 окт 2023
- What if you're told that it's NOT MS?! Then what?
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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.....😢
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 💯!
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 wish I had a neurologist like you.
Same!
We all do!
Me too!!!
Do you take new patients
me too
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
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
me too, tremors, electric zaps all over, cant walk straight, falling, dizziness/vertigo, cant turn quickly or i'll fall or tip over, pain numbness weakness, weak legs always in a chair, worsened tremors and balance after showering, i never leave my house anymore i've been stuck here all year since this started, and all of my doctors just say they don't know whats wrong even neurologist said she thinks i just have sleep apnea, oh ok i guess not sleeping well has cause me to have gait/foot drop in both legs putting me in a wheelchair, and these symptoms are ALL DAY EVERYDAY they have not eased up not even for a minute, i've stopped seeing doctors for this i'm not going anymore they're all clueless about me.
@@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
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.
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.
Hey there just came across ur comment.i have MS and my severe vertigo lead to me being in a wheelchair. Neuros are saying MS doesnt cause severe vertigo and the Ent is saying its not the ear. May i ask u what test u did for the inner ear? Do u mean a brain mri revealed ur lesions? May i ask how do u control ur dizziness? Wish u health sending u my prayers😊
@@lararose9106 I have MS.. and getting random bad vertigo .. ent said not ear but ms can cause central nervous system vertigo
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!!!
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 ❤
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 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 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.
Another great video Dr. Boster! Thanks
Thank you Dr. Boster!
I needed to hear this so badly!! What you do for us is priceless! Thank you!!
Wonderful video. Thank you!
Thank you for this!
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!
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!
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! 😊
Thank you so much! Appreciate your videos and lives.
You described my situation to a T. I feel calmer. I can’t get in to a neurologist for 3 more months. Thank you.
You’ve got a good buddy there.
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
The best doc I’ve ever seen
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.
Thank you for your wonderful video. Very informative and nicely done. 🙏🏻
😮 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!!
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.
i am in exactly this limbo situation, thankyou for your helpful video
Hi Dr Boster, you seem to be the exact person that I am looking for.
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.
This has me sobbing. Thank you so much!
Why? What’s wrong
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!
How can I give it 10 thumbs up?! Really interesting stuff in the video!
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
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
Very well explained! Thank you doc Boster. Hugs 🫂 to you and your family. You are awesome! Thank you!
Thank you kindly
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.
You make me feel positive with your knowledge of MS, thank you so much.😊
My pleasure 😊
Thank you for this explanation. It always helps to know more.
You are welcome!
Hi from Israel I wish that every Ms doctor will be like you now it it is only a dream... God bless you
Wow...a doctor that actually cares and foes above and beyond...diamond in the rough.
Thanks for the video Dr. Boster.
My pleasure!
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
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.
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. 🙂
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?
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 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 🔥🔥💖🔥🔥
Ty so much! Nystagmus was recently diagnosed & my eye specialist (Dr Bloom here in Dayton) took a look at me & is sending me for an MRI. I feel like an imposter subscribing until i know if this is the issue. Ty for doing a gray area video.
Could you maybe do a Nystagmus video? Maybe there's a few of us out here suffering with that too (seems like they maybe overlap). Information is really empowering 🙂
I have resting tremors, pain, and weird "spasms" and tics. I have demyelination on my MRI. I have been told I may have MS and I am kind of scared. I've passed most tests - when i focus I am fine.
I've had a bunch of white spots on both my MRIs
Dr AARON , I had many symptoms last two years. Severe head pressure nausea vertigo then I had Covid and all that progressed into neurological symptoms - weird sensation on the right side of my brain this grip sensation, hands used to burn tingle and legs tingle. The weirdest symptom is that I cannot figure out if it’s coming out from a brain or what is when I sleep I have squeezing sensation in my hands and brain just before I wake up. But as soon as I wake up I don’t sense it as much. Same thing happens every night for last two years. Do you think MRI would help me rule out if there is not a lesion in my brain and why do my hands have squeezing sensation at sleeping / wake period ?
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.❤
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!!!
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.
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!
I have been in this limbo for 10 years. Five neurologists. Hoping for answers soon.
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???
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 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.
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 .
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.
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 😢
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.
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. 😊
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.
What about the NFL test? My neurologist ordered that blood test instead of spinal tap to confirm MRI findings/MS diagnosis.
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.
Thank you for this wonderful informative video. I'm currently going through this
Glad it was helpful!
If have ms symptoms, but clear mri can you still be diagnosed with ms with positive LP?
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..
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
My condition mimicked MS. It started with neuropathy than add intractable vomiting, I had all the fog , aches, spasms, et al. It was only when my vision would dim in only my right eye, FINALLY after a year I would see a neuro-opthamologist who again did not see any problem but agreed to send me to a neuro-immunologist. Who again didn't see anything wrong with my brain. He reluctantly sent me up to neuro-immunology who upon a physical assessment called it SFN believing my diabetes was causal and a lab would show an MGUS. by this time I am 1 1/2 years in and have lost my job and will be losing my insurance WHAT DOES ONE DO?
Omg! Very similar to me - down to vision loss in same eye with exception that I do not have diabetes to blame it on but a uterus instead.
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 😭😭😭
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.
I thought CSF might not have any oligoclinal bands very early in dx. Other CSF finding might just show non specific inflammation such as few more WBC than normal, increased IgG ratio etc. Is that still the case?
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.
Is their any chance of doing a video about Octave Disease Biomarker blood test? How to interpret it. What the result tells a doctor and patient…for example when do results tell us it may be time to switch someone’s DMT?
Good morning 👁️
I was diagnosed with multiple sclerosis for 30 years and went to lyme specialist and found out I have chronic lyme disease. Doctors need to get up to date and check lyme disease first
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?
Can trans-focal neurological events, migraine aura without the migraine, microhemorrhages, and painful dystonic storms in the torso be MS? I am curious because I have these symptoms and have been told I have MS but I think it is something else. I have numerous lesions in the brain and pons as well, periventricular and subcortical. I had a cerebral brain hemorrhage at ten and recently had brain surgery for another aneurysm.
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 😢
IHi can you talk about the "Inverse vaccine" developed at the University of Chicago’s Pritzker School of Molecular Engineering (PME)
are spinal taps accurate and can we depend on them. mine from last year said negative but was still diagnosed with
ms
Thank you for this video Dr Aaron, you make a lot more people and myself included feel like we have someone on our side. All the best to you and your family at the boster center sir.
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
Happened to me just this week (thank you for your reassurance this isn't MS/ALS) and on the car ride back home, I found myself Wondering, what next.
How u doing 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 🇮🇳
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.
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 have Ms symptoms as well !!! MRIs came back normal I did them in April
My symptoms still getting worse so I went back to the dr and he ordered spinal tap ! Should I go for it or repeat mri again ?
I was prescribed baclofen and gabapentin to resolve numbness in hand. The numbness is more annoying than painful. I am really concerned about the side effects of these drugs. It also a temporary fix and not a solution. My next step is to se an Acupuncturist.
Watched your video intently. Interesting stuff. Soy allergy symptoms are similiar.
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
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.
hello sir
what is your opinion or experience with coimbra protocol