It's NOT MS! What happens next?
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- เผยแพร่เมื่อ 1 ต.ค. 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 💯!
I wish I had a neurologist like you.
Same!
We all do!
Me too!!!
Do you take new patients
me too
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.
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
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❤
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 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
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
You described my situation to a T. I feel calmer. I can’t get in to a neurologist for 3 more months. Thank you.
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.
Thank you Dr. Boster!
Thank you for this!
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.
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 😢
Wonderful video. Thank you!
Another great video Dr. Boster! Thanks
The best doc I’ve ever seen
Thank you so much! Appreciate your videos and lives.
I needed to hear this so badly!! What you do for us is priceless! Thank you!!
Loved the video Dr. B… Sounded like part of our discussion a few weeks back!
Amazing content ! Thank you so much for your time, doctor.
This has me sobbing. Thank you so much!
Why? What’s wrong
i am in exactly this limbo situation, thankyou for your helpful video
Thank you for your wonderful video. Very informative and nicely done. 🙏🏻
Hi Dr Boster, you seem to be the exact person that I am looking for.
Wow...a doctor that actually cares and foes above and beyond...diamond in the rough.
😮 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!!
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
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! 😊
Thanks for the video Dr. Boster.
My pleasure!
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.
Thank you for this explanation. It always helps to know more.
You are welcome!
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.
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!
You make me feel positive with your knowledge of MS, thank you so much.😊
My pleasure 😊
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!
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.
Very well explained! Thank you doc Boster. Hugs 🫂 to you and your family. You are awesome! Thank you!
Thank you kindly
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 🔥🔥💖🔥🔥
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
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
Hi from Israel I wish that every Ms doctor will be like you now it it is only a dream... God bless 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’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.
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.❤
You’ve got a good buddy there.
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.
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?
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.
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.
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!
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 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 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?
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. 🙂
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.
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 TH-cam Physical Therapy videos to help with the weakness on my own.
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?
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.
How can I give it 10 thumbs up?! Really interesting stuff in the video!
Hi, I’m from the UK. Wow, this is the best video I’ve found on TH-cam 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. 😊
Is there a way to get a print copy of your transcript so I can show my doctor?
Excellent video! BTW, I am one of those 10% MS patients with no ocligoclonal noconal bands in my spinal fluid. Have there been focused research studies on that 10% population to see why these markers are absent?
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
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 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
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 ?
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.
hello sir
what is your opinion or experience with coimbra protocol
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?
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
What about the NFL test? My neurologist ordered that blood test instead of spinal tap to confirm MRI findings/MS diagnosis.
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
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?
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
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.
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.
are spinal taps accurate and can we depend on them. mine from last year said negative but was still diagnosed with
ms
Thank you Doc for this great information. I feel the MRI reading I had showed nothing wrong, that is not possible when I had a TBI that took me over a year to rebuild my brain. So does that mean maybe I need a MRI with contrast or someone else to read it like a neurologist who may want to do his own reading?
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.
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 🇮🇳
What about Lyme positive findings in blood but nothing in cfs? Is the ms diagnosis false with positive igm titer?
I was in limbo for 2.5 years because im an atypical case of MS but finally diagnosed with MS in 2016
Hi Dr. B, I was in the state of limbo described. After additional testing, my second neurologist confirmed I have solitary sclerosis. Difficult to find information on the Internet regarding solitary sclerosis.
Can you point me any information regarding solitary sclerosis?
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 have been in this limbo for 10 years. Five neurologists. Hoping for answers soon.
Been a while ive had alot of MS symptoms MRI had no sings but im still fighting to rule out what i have
I have question for u if just took ocrevus infusion 3 weeks would I be able to take a Detox stomach cleaning or it will flush the ocrevus from my body please reply thank u
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 was diagnosed with vertigo several months ago, and ive been waiting to see a ENT for about 6 months now while still having all these things happening to me that makes me feel like im going crazy. I have dizzy spells every single day. I get double vision sometimes and have to cover one eye to see everything back to normal. I have accupuncture sensations in my face and forehead and eyelids. Sometimes my upper lip feels like its burning either on one side or the other...same thing with the pins and needle feelings. I also see like water puddles in my eyes., usually one side or the other. Im in loss of words that are on the tip of my tongue but cant say them. I feel turned around when im hunting sometimes. Hopefully October 17th when i see the ENT they will help me. Because i cant handle this much longer.
Do you have any theory i should go off of Doc?
Ive had an MRI of my brain that came back normal other than my care giver says something doesnt look right on my spinal cord in my upper neck.
IHi can you talk about the "Inverse vaccine" developed at the University of Chicago’s Pritzker School of Molecular Engineering (PME)
Can you please explain what NFL exams measure and how newly diagnosed patients could use them? How frequent also.
What if you’re allergic to the g dyes? Will you still be able to diagnose?
Does this meet ms dx, Lumbar puncture shows banding, optic neuritis in both eyes, & brain lesion?
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 ?
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