18% with Multiple Sclerosis are Misdiagnosed! [Data from UCLA and Cedar Sinai]

A shocking study by Dr. Mawra Kaisey in Los Angeles reviewed cases of multiple sclerosis referred to Cedar Sinai and UCLA and found that 18% were misdiagnosed! In this video, I review what diseases they actually had and how misdiagnoses occur.
Selected sources:
Incidence of multiple sclerosis misdiagnosis in referrals to two academic centers: pubmed.ncbi.nlm.nih.gov/30738...
MRI findings in migraine: link.springer.com/referencewo...
NY times article about CADASIL misdiagnoses as MS: www.nytimes.com/2019/05/01/ma...
Comment or ask questions below! I would be happy to answer!
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Make video requests in the comments section!
My book "Resilience in the Face of Multiple Sclerosis" on Amazon: www.amazon.com/dp/B07WP7H5LK
Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He is a partner in the Southern California Permanente Medical Group and practices in Downey, California (South Los Angeles). He has several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. You can follow him on twitter @Brandon_Beaber where he regularly posts about MS news and research.
Follow me on twitter: / brandon_beaber
Music: INNER GRACE - Copyright 2018 Wilton Vought Source: Really Really Free Music Link: • Video T
he video material by Dr. Brandon Beaber is general educational material on health conditions and is not intended to be used by viewers to diagnose or treat any individual's medical condition. Specifically, this material is not a substitute for individualized diagnostic and treatment advice by a qualified medical/health practitioner, licensed in your jurisdiction, who has access to the relevant information available from diagnostic testing, medical interviews, and a physical examination. To the extent that Dr. Beaber endorses any lifestyle change, behavioral intervention, or supplements, the viewer should consult with a qualified healthcare professional to determine the safety and efficacy of the intervention in light of their individualized information.

[@mattz5275]

Fantastic video as always. It's amazing how you only have 5.49k subscriber's with how much you offer our community. Ty for your ongoing work and contribution in this fight against MS.

[@DrBrandonBeaber]

Thanks Matt.

[@nancynicolaou8375]

I was misdiagnosed I had Lyme disease, and was given Tysabri after multiple negative line test, I should’ve went to a lymeliterate doctor, but I didn’t know at the time even existed. I was given Tysabri and paralyzed cannot use my legs can’t walk in wheelchair. I was doing yardwork and saw the bite markI should’ve refused and walked out of the neurologist office.! I had never had any vision loss or vision problems. I told every doctor they just try to push those expensive drug standards Road I didn’t go for a second opinion. Make sure you do now I have a lifetime of pain and suffering and can’t walk.

[@sylviajones3794]

Thank you for this video! I was diagnosed nearly 5 years ago and even though I take my medication as prescribed, I still doubt it! You've given me the fuel to finally get that second opinion

[@vivsalittlebitcrafty4854]

24 years ago I was diagnosed with Pernicious Anaemia and have been receiving B12 injections ever since. 9 Years ago (aged 51) I was diagnosed with Fibromyalgia...I am currently undergoing tests (waiting for MRI too) to diagnose a whole multitude of 'new' symptoms that have surfaced over the past year, for example, the numbness in one of my legs, pins and needles, burning sensations, eye pain, vertigo etc etc etc...(so far no-one has mentioned MS), but my curiosity got the better of me and of course I googled my symptoms...which in turn led me to MS...and eventually to this channel. Boy oh boy...this seems like it's going to be an interesting ride as regards the 'pitfalls' explained in this video 😆 I mean, as far as my own experience goes, the symptoms of B12 deficiency AND Fibromyalgia are almost identical...how on Earth am I going to be convinced that a possible diagnosis of MS would be correct? Hmmm note to self, self diagnosis is not clever!!!😉 however, at my age, I know my own body well and I do know for sure that something is going on, somewhere. I'm in the UK. Thank you for your very informative videos, I really wish I could pay you a visit Sir.

[@roberture5903]

Thankyou for another excellent video Dr Brandon. I always enjoy your videos but I have to say you really hit it out of the park on this one. I know I've said it before but I'm glad you and Dr Aaron are out there pulling for us. I hope your both with us for many years to come. I've been invited to the Boster Center this year for a clinic visit this year and hope to make it out there when the pandemic is under better. It's on my bucket list to meet you both one day and if that ever happens it would be an honor to take you both to lunch. Thankyou for everything you do friend. I apologize for any typos,I commented relatively late last night.

[@DrBrandonBeaber]

Thanks Robert. It's on my bucket list to meet Dr. Boster as well. This year's American Academy of Neurology Conference is virtual, so maybe not until 2022 sadly.

[@theMSguide]

Wow. It makes one think. The cost is not just a financial expression but also the human cost. Can you imagine what it is like to receive the news, the drugs, other treatments, all in error. Irreversible effects on the person. Hard to conceive really. Keep up the great work.

[@DrBrandonBeaber]

It can be devastating. Some people completely change their life plans after a diagnosis of MS, even altering decisions like career and family planning. I don't think I can fully understand the psychological affect of an MS diagnosis on an otherwise young, healthy, vibrant person.

[@RobdeKlerk-qg6lc]

Those misdiagnosed are still in the ms statistics as people who react very well on certain treatments...of course they dont have relapses when they don't have MS.. ​@DrBrandonBeaber

[@kbellmurray]

Thanks for this. I’ve had previous spinal surgery yet still received an MS diagnosis in 2018 and definitely skeptical about it.

[@DumbDadDuties]

Great video! I initially assumed misdiagnosis even with symptoms, MRI & spinal fluid results. Received a second opinion from an MS specialist confirming the diagnosis. Now I hope it is MS because some of the possible alternatives appear to be worse. Thanks for the humility to admit errors. I will continue to challenge my neurologist in a positive way of course.

[@abhishekdwivedi1651]

thanks Dr Brandon, very informative channel , i have been lurking around your videos for a while, amazing knowledge and well explained. What are the chances of initial MS not showing on Brain/spinal cord MRI , do MRI lesions always precede symptoms ? or its probably another disease . what is your recommendation in these cases . trigeminal issues plus leg weakness on same side. Thank you . Abi

[@misspamba1]

You are just brilliant 😘😘thank you so much

[@annaconsta]

For the first five years of ms symptoms i was diagnosed both by neurologists and other doctors with anything, but m.s.! It took five years to get to the bottom of things, but with such a difficult diagnosis, no wonder.

[@tomgarbett77]

Hey Brandon, been loving your videos since you commented on one of mine! One thing that resonated with me in this one is where you mention oligoclonal bands. When I was tested I was positive in both serum and blood which you say is atypical of MS. My neurologist hasn't seemed to have paid much attention to this detail as he wasn't the specialist that got the lumbar puncture procedure done. When I asked him about it he said that they would do further blood tests but that with my symptoms it is stillhighly likely that it is MS. So I was interested to know your opinion on this and what diseases/ problems could be the possible alternatives for someone who is positive for both? Would really appreciate your thoughts on this!

[@emilyanne4008]

Misdiagnosed with Lupus in 2009 after negative spinal tap and MRI, then had a relapse in 2018 and was diagnosed with MS after lesions on brain and spine, they didn’t make me get a spinal tap though and said it was likely all negative before because it was a prodrome. Been reviewed by 2 neurologists now (1 MS specialist) and recently got into a lifelong MS MRI study at NIH after they reviewed all my data so I feel very sure this is a correct diagnosis now

[@RB-kh6fo]

Surely by now there's enough data to see a correlation in patient symptoms to know when to suspect something other than MS

[@cherylvl1036]

Great video, thanks Dr. Beaber! I do have MS and while I wasn’t misdiagnosed I had many well meaning friends suggest I actually have Lyme disease.

[@DrBrandonBeaber]

Lyme disease does sometimes mimic MS as it can cause neurological manifestations such as bilateral 7th nerve palsy, meningitis, and even white matter lesions. Lyme disease is quite rare where I practice medicine though.

[@cherylvl1036]

@@DrBrandonBeaberI live in Northern BC in Canada and it’s not very common in my area but it does occur occasionally.

[@tinaj910]

Excellent video. My diagnosing neurologist referred me to a specialist to confirm diagnosing because I had so many relapses and disability in sort period of time. He confirmed MS. Ten years later I moved and another neurologist was skeptical because my MRI of the brain was clear, so I had tests for B12 deficiency and Frederick Ataxia(both negative). Was referred to an ALS specialist to see if had juvenile ALS(also negative) confirmed MS diagnosis. 24 years and counting.

[@DrBrandonBeaber]

It is unusual to have a "clear" MRI of the brain with multiple sclerosis, but it can occur. I presume you had spine lesions typical of multiple sclerosis?

[@tinaj910]

@@DrBrandonBeaber yes, lesions on my spine and a spinal tap that led to the diagnosis. Initially I had like two lesions on the MRI of the brain but subsequently they have disappeared I guess. The first 5 years after diagnosis I was having relapses that resulted in paralysis or not being able to use my arms.

[@dmphax]

In the Behçets disease circles, we oftentimes see folks diagnosed with MS, to later be diagnosed with Neuro Behçets disease. Or vice versa (NBD to MS, however this is much less common). It's nice to see that finally, Behçets disease is listed in the differential diagnosis for MS (this is relatively new). Edit: thank you for mentioning Behçets. ❤ I still doubt my MS diagnosis, 13 years in. Lol.

[@DrBrandonBeaber]

Behcet's disease is much less well known in the United States (where I am), so my guess is that Neuro-Behcet's is very commonly misdiagnosed as MS. This is an important distinction because people with Behcet's disease often respond to TNF alpha blocking agents such as Humira (which worsen MS)

[@dmphax]

@@DrBrandonBeaber indeed. I am in NB, Canada. My doctors have been honest, they have never seen a case of NBD, and I would have to see a specialist elsewhere to get a more definitive answer as to if I have both MS and NBD. I fit some of the symptoms of NBD, but thankfully not the more severe stuff like stroke.

[@amandakuecherer6742]

I am now doubting everything about my life. I have only ever had 1 symtom, blindness in 1 eye that lasted ... 10 minutes. I was diagnosed in less than 2 weeks after an eye exam, mri and spinal tap. I've never seen my mri, i'll make a point to ask to see my lesion next appointment. I had zero issues with ms for 15 years but just recently started gettin drop foot.

[@MK-fi6mh]

Thank you- I feel as though I have been misdiagnosed.

[@wajdigeorges4529]

I like your video. I would like to setup a virtual appointment with you for a second opinion for MS diagnosis. What would be the best way to do that?

[@adamw1052]

I was initially diagnosed with glioblastoma from my original MRI, was referred to a neurosurgeon who ordered a speciality MRI then referred me to my first neurologist who got a negative spinal tap and said I'd be in a wheelchair soon. I got a second opinion he held off on any DMT 6 months later got another MRI and LP I had additional leisions and positive fluid and soon after stated Tysabri with no new leisions in the 3 years since.

[@DrBrandonBeaber]

I'm glad you are doing well Adam. People with "tumefactive" MS (MS with a single dominant lesion resembling a tumor) are very frequently misdiagnosed.

[@lisaelliott5135]

Excellent video , I have very interesting case , normal mri for 7 years . Have attacks similar to ms . Seen 5 neurologists have had every single test other then spinal tap . In Ontario not done as often. Wish they would give me one because that is the test I haven’t had . I have had all ms symptoms not optic neuritis. Arm went dead last month and then it got better . Legs are stiff , fatigue. Weakness in legs and arms . First attack 7 years ago numbness in legs , tremor . Fatigue. It all resolved. Then little ones of the years . Big one last year arms went dead the. Got better . Same as this year . Now have weak legs all the time . Doctors are very scared to put ms label . I wish would get label to get one meds . Your videos are Amazing!! Doctor since 2009 omg you look 20 👍

[@DrBrandonBeaber]

Thanks Lisa. The spinal tap is definitely becoming less popular everywhere which sometimes contributes to misdiagnosis (most people with vascular MRI lesions misinterpreted as demyelinating lesions would have a normal spinal tap). I won't say my age, but I am definitely way older than 20 :)

[@InesBrandling]

Thank you for yet another great video! My question is: considering I’ve only ever had optic neuritis (last may) and haven’t shown any other symptoms since (or ever), would you say the best thing for me to do is to ask for another spinal tap to make sure the presence of O-bands wasn’t a one-time event? Thank you!

[@DrBrandonBeaber]

I can't comment on your specific situation without further details. An abnormal spinal tap can occur with uniphasic optic neuritis or when optic neuritis is part of another autoimmune disease. Based on the current diagnostic criteria, someone with a single episode of optic neuritis, an MRI scan typical of multiple sclerosis, a spinal tap with oligoclonal bands isolated to the cerebrospinal fluid, and no better alternative diagnosis would meet the diagnostic criteria for multiple sclerosis. It is very rare that I would recommend a repeat spinal tap.

[@mihairosu2947]

Hello Dr Bieber I was reading about Functional neurological disorder . It looks like a big mimic of ms without specific MS leasions . If you think is usefull maybe one video about it will be helpfull . I have lot of specific symptoms without Leasions specific with my symptoms ( Only 2 leasions of 2 mm in non specific brain areas ) . To small ,wrong locations no T2 enhance . Like I talked to there are some others in my situation also . Thank you once again .

[@DrBrandonBeaber]

Functional neurological disorder could definitely be misdiagnosed with multiple sclerosis if there are coincidental white matter lesions on MRI. There are definitely many people in your situation.

[@adrianaluciacespedes9252]

I had two lessions (but they were super small) and positive spinal tab when I was diagnosed. I have no symptons now (2 years after).. just a little numbness on my left leg when tired. I have 2.5 years without an MRI. I think that I will get one at the end of the year 🙏.. So, let's see how it goes. I'm on interferon. My doctor told me that they looked at other diagnosis, they were negative. So, MS was the only one possible diagnosis left..🤷‍♀️ For now, I will keep treatment and see how my follow up goes..

[@DrBrandonBeaber]

Best of luck Adriana. I hope your MRI comes back with no new lesions :)

[@rawsomehappy]

“Assess the situation” and “Do no harm” must be in conjunction with an open mind and a humble physician. Referring the patient, and not the diagnosis to a colleague, leads to further misinterpretation if not followed up. A patient will take their records and reveal different symptoms based on wording of questions from a new physician. It also helps if the patient is their best advocate, is forthcoming, and takes an active role in educating themselves about the diagnosis received so they will be able to question what’s being told

[@DrBrandonBeaber]

I wholly Agree Myrna.

[@larabourke3291]

Thank you for this video! I have been recently diagnosed with MS. I had a Spinal tap with no oligoclonal bands and when I asked my doctor if I was positive or negative for antibodies in my blood they looked at me like an alien. They had no idea what I was talking about... and asked me which antibodies do I mean... so I wanted to ask you for the exact name of blood test antibodies I should be getting. Then I can ask my doctors to do the tests! I appreciate your help!!

[@DrBrandonBeaber]

I have a video explaining the interpretation of oligoclonal bands (antibodies): kzbin.info/www/bejne/oKqvn4dsoc6qb80 Approximately 90% of people with MS will have >1 band in the cerebrospinal fluid which does not correspond to a band in the serum (blood). It is advised to do the spinal tap and blood test at approximately the same time, ideally within hours as antibody production fluctuates tremendously.

[@zuldo8577]

Could you do a video on subclinical MS?

[@4everbarby]

Omg tx u for u video my neurologys think i have ms my lumbar puntion come normal and my MRI said change in the white matter but now i think i have to look for a 2 opinion tx u soo much

[@DrBrandonBeaber]

Best of luck to you Barbara.

[@venomkitty11]

Im still in the process of diagnosis, my neurologist, after doing bloodwork and testing positive for Antiphilosoid antibodies twice (forgive spelling if incorrect) did diagnose me with APS but says he is not convinced i dont also have MS, he thinks i have both. So im scheduled for more tests, is that something you have seen before?

[@JustChrissytheCrone]

This was an amazing video! Thank you. I have Pernicious Anemia and often wondered if they were linked. My next appointment I plan on addressing this in addition to the regular appointment. Thank you!

[@JustChrissytheCrone]

Also...side note, many people in my Facebook ms groups suffer with low b12 is this common place with ms in your history?

[@eltiarribero]

Had all classical symptoms of MS, Brain MR showed UBO's on Flair seq, T2 C Spine Sag nothing on cord, however radiologist said finding of UBO's consistent with MS. Not thrilled with some radiologists😜I used to work at Cedars, Rad said very specifically sup labral tear on Ax T2 FS, image 22. Surgeon did Sx, post Sx report said NO LABRAL TEAR FOUND. Ended up with 4 Lt shoulder Sx at Cedar because of misdiagnosis🙄😩. Wonderful video. Thanks.

[@DrBrandonBeaber]

Thanks for sharing Chaka. Glad you enjoyed it.

[@cinemike8207]

Thank you for your videos and information on MS Dr. Beaber! I wanted to ask if you would begin a drug treatment for my specific situation. So I had an MRI for a headache and incidentally they discovered the lesions typical of MS. I'm told that they were small, mild and there were no lesions located on my spine. Next up was the lumbar puncture, very unpleasant, and I did test positive for the markers for MS with that. So with out having any clinical symptoms, my doctor diagnosed me with RIS and just wanted to monitor the condition. Unfortunately on the follow up MRI they did find a new spot, also appearing small and mild. My doctor asked me to do a little research on MS drugs until our next appointment which is a bit scary. So my question is, would you treat my condition with medication even though I do not have clinical symptoms but with the tests seeming to indicate that I'm at high risk of progressing? If so, do you have a recommendation for what drug might best fit my situation? Thank you!

[@DrBrandonBeaber]

Unfortunately Mike, I can't give you medical advice here. There isn't great evidence available for what to do in your situation, so most doctors would just use their gestalt and offer you the option of monitoring vs. starting medication. I do have some concern that as a community, we have to be cautious of over-diagnosing people and prescribing a lifetime of medication. I should mention that spinal cord lesions are the better predictor of developing clinical multiple sclerosis with RIS (not the spinal tap results). Right now, all of the highly-effective disease modifying therapies do have some significant degree of risk.

[@cinemike8207]

@@DrBrandonBeaber I really appreciate your thoughts on my situation. Yeah my doctor was going with the monitoring the condition option initially but I guess this new spot is making her consider treatment. I'm on the fence about it for all of the reasons that you mentioned. I'm concerned about waiting too long and suffering damage but I'm also concerned about the effects of the DMT's. I am considering starting with a more mild treatment like Copaxone. That way I'm getting some protection while not diving all the way in. I know that there is some debate though with starting milder with some believing that hitting it hard at the start is better. Whenever I've engaged on message boards, a lot of people seem to be pushing that I start on Ocrevus. In any case, thank you again. Your videos are super informative.

[@arr2820]

@@cinemike8207 the lesions can come and ho on their own.

[@danielhernandez-fo3mj]

it took me 7 neros before i got my diagnosis but the last one i think only got it due to the development of dawson fingers and growth of a lison into the corpus callosum around the time i had an attack last 4 days i do have some that the radologist consider liner lisons so i was on a borderline diagnosis of svd and ms expecully since my spinal tap wasn't positive for ms but i coudlent see the bands results that hid them form me some radologist have described my lisons as linear but only from the top down view the ones showing the picet fance sign from the side view are very ms looking but when vieed form the top view it can bee seen liner like from the same lisons ...... now in the beginning i have had no doubt i have ms ... even now I'm sure i have it cuz its so common in my family line as my mom and both my older sister have ms and my mom had an uncle with it and cusion with it ........ but recently i got apossble lisons on my spine around a attack that left me needed a walker not my cane for about a week and breathing issues (I'm back to just needing my cane ) and face pain like TN only fixed with carbamazmapine but when they did my MRI there is a abnormal find the radiologist noted being in the center on my spinal cord small and couldn't cross reference it and said could do another MRI with smaller slides but coped it up to motion artifact ... my nero said the reason it is so questionable as not an artifact is there's not vibration of the lsiosn as normally seen in mosion artifacts ... after hearing of mt attack symptoms she decided to ook for the NMO anti body (came back negative thank god though i am on tefcadera and I'm not sure if this can cause a fauls negative ) anyway i have also been developing symptoms not common to ms and have been needing to go to a rhumatologist ...... but I'm thinking this is signs of me having a dul diagnosis as none of the newer non ms symptoms were there in the beginning of my ms diagnosis as i always had clear signs of attacks and small growth of my lisosn gradually poping up then slowing getting better ..... till now so I've been super confused at this whole prossess agen ...... but everything i read says corpus callosum touching lsions are super spusific to ms and dawson fingers are somewhat more common in ms though can be other illnesses but most my lsions are on one side of the brian like 5 of them on the right and 2 on the left and one is antior temporal lobe lol and the ones on the right are the picket fence ones and dawson fingers ..... its mainly this new abnormality on the c spine and my need for the walker and breathing issues and tn issues are making us all confused ... this ms stuff is so hard when it comes to diagnosis and connecting to ms issues or something else

[@jacobosantamartabarral434]

Congratulations on this video. When I was diagnosed with MS I did not have any doubt but I did have a second opinion just in case. The theme is that I was given the same answer. Like 13 years after my neurologist tell me to go and have a sleeping test. The result was that I have a lot of apneas during my sleep and thus I am you using a CPAP mask. My symptoms have been improving thanks to a better sleep and thanks to exercise which it has made me think after your video that I was misdiagnosed however one doctor has told me that if I have it, it would be very difficult to not see it. Is that correct?

[@DrBrandonBeaber]

I can't comment on your situation, but the overwhelming majority of people with multiple sclerosis have typical lesions on an MRI scan of the brain. There are rare exceptions.

[@jacobosantamartabarral434]

@@DrBrandonBeaber Thanks, I will let you know what my doctor says un the next appointment.👍

[@CharlesLumia]

I was diagnosed last year after an MRI and a spinal tap. The lesions on the MRI didn't look like that lower picture from what I can recall, mostly they were smaller areas with one large area on my brain. The spinal tap had the bands or whatever and confirmed the MS enough to diagnose me. Don't think a second opinion is really necessary in my case. My balance is terrible and I have a nystagmus too.

[@DrBrandonBeaber]

Interpretation of MRI to look for demyelinating lesions is quite a bit more nuanced than I showed in this video. Perhaps I'll do a separate video on this topic.

[@CharlesLumia]

@@DrBrandonBeaber that would be great! Thanks a lot for your channel Dr. Beaber.

[@RonaldBeirouti]

I guess it's not just the fact that people that are misdiagnosed are taking DMTs without needing them but it's also the fact that they are not getting treated for what they actually have. What's interesting is that many of the diseases they actually had were autoimmune. Maybe the DMTs they were taking were helping them. For example, rituximab for lupus ;-)

[@DrBrandonBeaber]

Potentially yes. If someone has an unclear diagnosis but clearly an autoimmune disease of the central nervous system, a common strategy is to use a treatment which would work for many autoimmune diseases (i.e. rituximab, steroids, cyclophosphamide, imuran, etc)

[@youssefbatl]

I still have doubts about my diagnosis...

[@stephaniehill1784]

Would you be willing to review a few images from my most recent MRI?

[@calimongoose8433]

Infected dental implant that was possibly a two year or more situation. May have spread to nerve in face jaw n neck then to spine which may have caused a drop foot and drop leg. Dental implant plus tooth n infection were removed and seems like the symptoms have improved a little. With more time the symptoms may lessen. Not sure how MS works so who knows in 3-6months if things get better or worse or stay the same. What do you think?

[@marthanewsome6375]

Far out, I have had for over 10 years with suspected MS, before that I had got diagnosed with TN and still have episodes with lidocaine infusions in hospital over the years. Just recently I have evidence of Lupus. Could Lupus do all this? I do get blurred vision, but it's in and out, but the muscle weakness the fatigue is indicating MS to me. What do I have I am so confused.

[@ninanieves1157]

Can you be misdiagnosed with having something else but you have MS ? I have ehler danlos syndrome but have had a abnormal MRI with subcortical white matter…. I also have Temporal lobe epilepsy…. Just wondering.

[@aprilrushing2646]

Massive lesions, temporary bouts of vision loss in one eye. Peripheral neuropathy, incontinence, spinal tap, MRI as diagnostic criteria for MS for someone close to my family. They are Already stage 2 it seems rapid for being a few years.

[@aprilrushing2646]

Also they walk with a Cain

[@tracyannaleclair8003]

My WML's on MRI looked nothing like the bottom picture. The csf came back with 4 OCB's. I have a variety of symptoms but most are NOT typical of MS. My cognitive function and increased anxiety with headaches makes me most concerned. I have been training hard in the gym for years, x-ray showed subluxation in my cervical spine. The head aches I get and pain I have always felt were originating from my neck. Could this be causing spinal cord compression reduced blood flow pinched nerves all leading to inflammation of the CNS??? My gut is telling me it's something else, not MS. But the OCB's put me over the edge. My PCR for Lyme in the blood was negative and the levels in csf were within range

[@DrBrandonBeaber]

Sorry. There is no way I can comment on your situation.

[@byron2521]

Information is power! I suspect I have been misdiagnosed. My neurologist tried to get me to start Ocrevus treatment. I said, "yeah, I think I need a 2nd opinion". She first flip-flopped on my MRI. "Well, it might be MS, could be something else?" Then she also diagnosed me with myasthenia gravis. She told me I had both, myasthenia gravis and MS. Possible but unlikely. What are the symptoms of myasthenia gravis? Almost identical to MS.

[@DrBrandonBeaber]

I can't comment on your situation but MS and myasthenia gravis are very different diseases and are usually not mistaken for one another.

[@annmorrison3771]

This is such a complex topic. I have had three neurologists tell me I do not have signs of a demyelinating disease in my brain MRIs, yet I have two lesions in my thoracic spine, unmatched oligoclonal bands, elevated IgG results in CFS, and left leg numbness, fatigue, spasticity, and irregular blood pressure. So, the original diagnosis was MS, but the MS specialist said not currently- so now maybe it is Transverse Myelitis caused by flu vaccine activating a dormant virus or possibly even Long COVID playing a role. So hard to know if it is better to get on a DMT early and risk the consequences of lowering immunity during the pandemic or waiting to see if there is another attack or new lesions in another area that could cause irreversible damage. Seems like a no win either way. What are the thoughts on Mavenclad until BTK clinical trials are complete in another two years?

[@DrBrandonBeaber]

I can't give you personal advice here. There are some people with "recurrent transverse myelitis" without brain lesions.

[@07broly]

Also, I'm a quarter Latin which having the gene makes it very, very aggressive and progress rapidly as I'm only 27 and nearly bedridden.

[@CharlesLumia]

Darn that sucks :/ I'm 37 and my movement is terrible.

[@directioner2870]

Hello doctor .. I want to ask you ..... my gamma globulins are normal and my ana test is negative i have two lesions in my brain but none on my spinal cord .. I started having avonex on october 2020 after 5 month I had another attack I lost my vision and at the end of 2021 I had another lesion in my corpus callosum ..... I have rrms and i was diagnosed when i was 17 I'm 19 now ... my heart is always beating fast and I feel faint all the time and I always have mouth ulcers and my ferritin levels are very low... Is that normal ? How can I have presence of oligoclonal bands with normal protein electrophoresis .. all my globulins are normal .... thanks 🥰🥰🥰🥰🥰

[@OddinaryOne]

Pretty sure there’s no chance that my diagnosis is incorrect :(

[@adrianaluciacespedes9252]

Are there any cases reported of positive ogliconal bands due to cerebrovascular/isquemic events?

[@DrBrandonBeaber]

I wouldn't expect ischemia to cause oligoclonal bands, but oligoclonal bands unique to the CSF is not a 100% specific finding. It is possible to get a false positive.

[@Wyomi]

I think I was misdiagnosed. I was diagnosed a year ago and I did seek out a second opinion. The second opinion Doc seem to just go along with the diagnosis of the first doctor, I didn’t care for that physician in general anyway. A third opinion thought it was not MS and did some additional testing and since nothing definitive came back, she went back to the diagnosis of MS. I am seeking out a fourth opinion, as I still think it is incorrect. The third opinion doctor said that my brain lesions, three of them, we’re not indicative of MS. I am currently on Ocrevus, and I really like to get off of it. In general I do not like picking drugs.

[@1feralleo]

I have dx of RRMS, based on mri,symptoms with bell's palsy. No spinal tap ever done, dx in 2014 but no meds really help relapses. Do I need a spinal tap to really know? My new neurologist asked if I had family with Lupus or RA which I didn't know for sure, but the meds I'm on now is for MS and RA, but I can't take the nausea so I'm ready to give up

[@DrBrandonBeaber]

I wouldn't be able to give you any medical advice here. "bell's palsy" refers to inflammation of the facial nerve (a peripheral nerve) and is a separate disorder. Some people with multiple sclerosis can have inflammation of the pons near the 7th nerve nucleus causing similar (though slightly different) symptoms.

[@darrenfenton9280]

Very good ta. I thought diagnosis of ms was on autopsy. It's prognosis till then.

[@dmphax]

My neuro said essentially the same thing the other day. They can't 100% diagnose MS without a brain biopsy.

[@DrBrandonBeaber]

@@dmphax There's an old joke in medicine: Pathologists know everything and do everything...but a day late.

[@dmphax]

@@DrBrandonBeaber 😂😂😂 that's perfect!

[@demoskunk]

Initially diagnosed by a neuro with RRMS then properly diagnosed 2 years later by an MS specialist with PPMS.

[@cesarromero7856]

Hello, are you taking medicine? I am in your same situation. I am taking aubagio but the doctor still recommend aunagio to me

[@MohamedAmin-ko3ui]

Thanks doctor for sharing the information After watching that I think I'm misdiagnosed ! I'm on tecfidera and I changed my lifestyle style totally I didn't have attaks since I was diagnosed for more than 2 years, legions on my 2nd MRI was significantly regressed as mentioned in the report My doctor says I can stop decfedra in 5 years 😀

[@InesBrandling]

Did you have a spinal tap done?

[@MohamedAmin-ko3ui]

@@InesBrandling yes , I was diagnosed only with RMI at first, then I had to do spinal tap to confirm and it was positive and it was , that was more than 2 years ago

[@InesBrandling]

@@MohamedAmin-ko3ui Thank you for replying! I’m kind of in the same boat as you. I was diagnosed with MS last year after an episode of optic neuritis but haven’t shown any other symptoms since or ever. I have two tiny lesions on my brain, none on my spine and the spinal tap also came back positive for o-bands. I’m having a hard time accepting the diagnosis simply because I feel completely normal (I did start Tecfidera right away as well, just in case).

[@MohamedAmin-ko3ui]

@@InesBrandling oh sorry to hear that , Just know that if you have got MS or not, there are so many things you can do about it and the earlier you take it seriously For me I have accepted it but I'm not going to give up

[@davidking6617]

Tecfidera is poison

[@07broly]

Thankfully I'm sure that I wasn't misdiagnosed as I was personally very suspicious of MS since all of the symptoms that I was experiencing in conjunction, added up to likely being MS which I ended up being correct. I do have a hypothetical question though, would receiving human umbilical cord mesenchymal stem cells via infusion cause potential healing, then receiving the HSCT procedure to halt MS and recieve another infusion of MSC cells after HSCT to potentially expidite and make a more full recovery?

[@DrBrandonBeaber]

In theory, yes. In general, it would make sense for us as a field to add a regenerative therapy on top of an immunomodulatory therapy. I think this is the way of the future, though not necessarily with mesenchymal stem cells.

[@mobsterlobster]

I was diagnosed with optic neuritis last year. I had an mri of the brain and the findings were not typical of MS. This was diagnosed by a neuro ophthalmologist. I am afraid to go to another neurologist because I am afraid they will diagnose me with MS.

[@DrBrandonBeaber]

You may appreciate this video on MRI interpretation: kzbin.info/www/bejne/fX_Rk5Rrfbupmrs

[@ghost8726]

Hey doc! Could you make an updated video on progression in absence of lesions with Ms? And talk about progressive relapsing MS as a category? I saw your videos about relapsing remitting being progressive too, so wouldn’t that mean that PRMS is an actual thing?

[@DrBrandonBeaber]

I'll make a note of your suggestion. I may do a video on what professor Gavin giovannoni calls smouldering MS. PRMS is definitely an actual thing. Some people with progressive MS have superimposed relapses.

[@ghost8726]

@@DrBrandonBeaber I see. I asked mainly due to my case. I have had no new lesions over the last 3 scans ( 1 per 6 month ) and am on ocrevus. But I have significantly worsened over the same period of time. I have been to 2 neuros and they both have differing thoughts. One things I have RRMS and the second thinks I have SPMS. But I disagree with both and think my patterns are more in line with PRMS which most neuros I have come across seem to ignore as an actual thing. I also saw your tweets in reference to the data on progression in absence of lesions and would love to see a video on that. Comparing the dates of this progression and which drugs work best with it is a topic which is relatively new to the general Ms community...most of us aren’t even aware about the brain atrophy rates which I found out about through your content. For sure an interesting topic and would love to learn more on them from you. Thank you for another amazing video doctor! You’re an angel for us Ms patients and you don’t understand how much you and Dr Aaron have helped thousands of us in every element. 98% of the things I know come from you two, and I’m thankful that you take your time and do this for us. Thank you!

[@karenpny]

Ghost, I was diagnosed with prms at Imsc/Tish. It is an actual thing. A different MS specialist says I have parts of rrms and parts of progressive ms. They don't use that terminology. They did away with it. Odd but true!

[@ghost8726]

@@karenpny yea. That’s what I mean. It’s an actual thing. But they don’t use it anymore. Even on Ms society, if you see “types” you’ll only see RRMS, SPSM & PPSM. And there was a video by Doctor Brandon which said it wasn’t used rn too. Odd for sure. Especially because, while it’s rare, there are patients who fall until PRMS as they’re relapsing & progressing

[@amydascalos3964]

@@ghost8726 Doesn't matter what you call it..you have some sort of progressive ms..and your best chance to stop progression is really hsct..get sandiselvi's amazon book about her hsct.

[@dikshitagupta4691]

I had a severe episode of Optic Neuritis last year in March. My right eye vision did not get restored completely and got restored only till 1 meter finger counting. I got Anti NMO and Anti MOG serum and csf test as negative and the presence of oligoclonal bands. I have been diagnosed for MS. Since the episodes for MS are not this severe, do you think there is a chance I might have been misdiagnosed?

[@DrBrandonBeaber]

I can't give you personal advice here, but one thing I have seen several times in my career is that doctors will misinterpret the result of oligoclonal bands isolated to the cerebrospinal fluid and make a diagnosis of multiple sclerosis after optic neuritis or transverse myelitis. The key test would be the MRI of the brain. If the MRI of the brain is normal, the risk of multiple sclerosis is quite low (around 15% based on the famous optic neuritis treatment trial: pubmed.ncbi.nlm.nih.gov/18541792/)

[@dikshitagupta4691]

@@DrBrandonBeaber thank you so much. I'll look into this and talk to my doctor about this

[@Lauren112287]

What about having the oligoclonal bands in the serum and the CSF? I know you said antibodies in both are atypical in MS but what about the bands?

[@DrBrandonBeaber]

Having bands in the CSF and serum is not the expected finding in multiple sclerosis. This can be a normal variant and it can sometimes be associated with central nervous systems infections and systemic autoimmune diseases with central nervous system manifestations.

[@Lauren112287]

@@DrBrandonBeaber Thank you. I was initially told the last few months that I had ADEM, as I had sudden symptoms one week after a vaccine. I had the vomiting, brain fog, tingling, etc. I also had bands in both fluids. Another neurologist is now telling me it’s MS. That ADEM doesn’t happen to quick to a vaccine and that delirium has to happen. I am confused. Thank you for clarifying.

[@DrBrandonBeaber]

@@Lauren112287 I can't comment on your specific situation, but I wish you the best of luck.

[@mariesimonsen3793]

Great video as always dr. Beaber! I was diagnosed in 2019 and got a confirmation in 2020 after switching hospital, neurologist and country of residence ;-) Never had a spinal tap though, it was deemed unnecessary. I came across a clinical trial in The Netherlands that might interest you. Instead of hitting MS hard, they investigate stopping treatment if the MS has been stable under first-line treatment. Feels very contradictory to me. It is the DOT-MS study ref. NCT04260711.

[@DrBrandonBeaber]

Spinal taps are being done for MS less and less frequently. There is another similar study to DOT-MS called DISCOMS: clinicaltrials.gov/ct2/show/NCT03073603 The principle investigator John Corboy is well known to question the benefit of DMTs in older individuals with long-term stability. We will have to see what the results show I suppose.

[@2009gameel1]

please can u give us a hint about 3D FLAIR

[@ResonantFreq528]

I had doubt. At one point I thought it could had been Lyme Disease. My first symptom was optic Neuritis but the specific eye fully recovered. My MRi showed lesions on my optic nerve but other places as well. Later I had precursors of another attack, if my spine was jostled to much. It was like my right side was getting shocked. It later evolved in other things. At some point I had a spinal tap and there were no OCBs, which I think is odd. I was doing well on Copaxone but did poorly with Ocrevus. 5 months ago I went to Mexico and had aHSCT done at Clinica Ruiz. Slowly recovering now.

[@DrBrandonBeaber]

Having no OCBs on a spinal tap is uncommon in MS, but it can occur. I would question the utility of doing a spinal tap if a negative result isn't going to change the diagnosis.

[@ResonantFreq528]

@@DrBrandonBeaber I understood it at the time.The spinal Tap was being used to confirm and deny MS and or Neuro Lyme. May have changed the way I was treated.

[@DrBrandonBeaber]

@@ResonantFreq528 True. Perhaps they were mainly doing the spinal tap to rule out neuroborreliosis given your history of tick bite.

[@spencercooper1603]

Ya i know a guy who had his dx change to susacs

[@MohamedAmin-ko3ui]

Let's have some fun 😉

[@DrBrandonBeaber]

:) It's a lot of fun making these videos and seeing the comments.

[@MohamedAmin-ko3ui]

@@DrBrandonBeaber that is awesome, it's a catchy intro phrase ,and makes the subject easier to digest, keep it up doctor 😀👍

[@spencercooper1603]

Heck ya!!! I love it. Let's....have some fun!!!

[@ichabod13]

I still thought I was misdiagnosed until one of my more recent MRI reports and the radiologist mentioned 'Dawson's Fingers' in the report. In some ways it was reassuring that maybe I do have MS after all haha... I think some of it is just hopeful thinking, it's still hard to wrap your head around having a condition like MS.

[@Jessie_Hope]

There are many other conditions with “Dawson fingers”.

[@alfredmiller8021]

The MRI of the brain in MS is indistinguishable from the MRI of the brain of Neuroborreliosis. Every patient I have encountered with the diagnosis of MS is positive for Neuroborreliosis (Borrelia infection) when properly tested. This infection can be eradicated with appropriate antibiotics. Alfred Miller,M.D.

[@alfredmiller8021]

@@RenEBerry. Neuroborreliosis is an infection with the Borrelia spirochete - Borrelia Burgdorferi (Lyme Disease) is only one of the Borrelia. I can not claim that every case of MS is due to Neuroborreliosi, but I can tell you that 100% of every MS patient I have encountered is positive for Neuroborreliosis when properly tested. This infection can be eradicated. Current $mega research in MS focuses on alleviating symptoms - none on the actual cause. I became interested in this when the MRI of MS nd Neuroborreliosis are IDENTICAL. Turf protection ?? has caused total dismissal of this concept by Neurologists and Pharm. Proper testing for Neuroborreliosis is critical. Furthermore, testing for Lyme Disease in an MS patient who is infected with a different species of Borrelia may result in an erroneous exclusion of Neuroborreliosis. When testing, every species of Borrelia must be included.

[@alfredmiller8021]

@@RenEBerry. MS is caused by a Borrelia infection. There are many species of Borrelia - Lyme is Borrelia Burgdorferi. When testing all species must be included.

[@alfredmiller8021]

@@bnice2all Borrelia infections (Lyme Disease is Borrelia Burgdorferi) can be transmitted sexually. Borrelia is a spirochete just like another spirochete disease - i.e. Syphilis.

[@alfredmiller8021]

@@bnice2all Neuroborreliosis causes MS. There are many species of Borrelia included in the designation of Neuroborreliosis. Lyme Disease is Borrelia Burgdorferi - when testing for Borrelia infection all species must be included. A negative test for Lyme Disease does NOT rule out Borrelia infection - the infection may be caused by a different Borrelia species..

[@Jessie_Hope]

Just curious, I was diagnosed with MS at Mayo Clinic. They did a complete Lyme disease work up for which I tested negative for everything. Would they have tested for this specific parasite?

[@spicyspacecake]

Wonder what % are misdiagnosed with anxiety & a zillion other things when...it really is MS!!???

[@DrBrandonBeaber]

A lot, though the medical community is getting better at this. I would have to do a separate video on this.

[@spicyspacecake]

@@DrBrandonBeaber your videos are great and getting better and better! I’d welcome another video on this topic!! 🌟

[@Jessie_Hope]

That was me for years. I quit going to the doctor I was so humiliated and frustrated. I lost valuable brain tissue and function as a result.

[@jazzeyjeff953]

fuck, ive never had a spinal tap

[@amydascalos3964]

..If people are EBV negative...they don't have ms..they have something else.

[@nurtenayaz5193]

Ben Türkiye kiyeden izliyorum hep takip eyorum türkce

[@arr2820]

Nasil turkce izliyorsunuz ?

[@ralphrosario1]

How can I come to you

[@DrBrandonBeaber]

I work at kaiser downey (South Los Angeles)

[@ralphrosario1]

@@DrBrandonBeaber do you have a email I can reach you at .

[@nurtenayaz5193]

Türkcede açıklama lütfen

[@DrBrandonBeaber]

:) Sorry. I can't help you there.

[@human-pm2kv]

Spinal tap for me 7/23/15