Multiple Sclerosis: 8 Pointless Tests
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- čas přidán 17. 05. 2024
- 00:34 Epstein Barr Virus
1:42 Neurofilament Light Chain
2:54 Vitamin D
4:17 CT head
4:55 EMG/NCS
5:48 BAER/SSEP
6:30 Anti-AQP4/Anti-MOG
7:13 OCT
This video criticizes excessive diagnostic testing in people with MS. I give a rationale for criticizing these 8 specific tests. Notably, I forgot to include an MRI of the lumbar spine which is sometimes inappropriately done in people with MS
Comment or ask questions below! I would be happy to answer!
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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.
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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. - Věda a technologie
I would love a video thats the opposite of this! What tests in your opinion SHOULD be run when making a new diagnosis and for periodic monitoring?
Thanks for the suggestion.
Me too :)
Hey Doc, I've come to love your videos, I was just diagnosed in late October, wow what a ride its been so far. I am here in Florida and I got to go see a really good MS neurologist Doc and I am thankful for that because he does't see new patients, I am start my first treatment of Briumvi next Tuesday this is the med he wants me to take, it was hard to get qualified by insurance but its going to happen. I am scared and excited all at the same time. My symptoms are numb fingers and numb lower body and feet, already done steroids by infusion for 5 days, on steroid pills now tapering down. Thank you for you great information. It's been so nice to watch your videos and learn about this brand new thing in my life. 🙂
I refused a few of these. I do my research, plus I know medical billing and the convos had about making the practice more money. Just because you can does not mean you should.
Hit out of the park again Dr B 👏🏼👏🏼👏🏼
Thanks
What an honest and refreshing video! I've done almost all of the above - D vitamine levels once a year, VEP once a year, EMG, and always wanted to have a test for EBV. My theory, as everyone else's, was if I don't have EBV antibodies, I don't have MS. Guess what, turns out there absolutely are people with negative EBV test who still have MS, so that's a myth that should be dispelled.
When I doubted my diagnosis, my neurologist did exactly what Dr. Beaber did - showed me a photo of my brain and said - "This is your brain. All these white spots are lesions. You absoultely, undoubtedly have MS."
There are people with MS who are EBV negative, but you also have to keep in mind that no medical test is 100% sensitive and specific. Someone testing negative could have EBV infection but just have very low antibody levels...or there could be a problem with the assay.
@@DrBrandonBeaber thanks, doctor. Yes, in any case, that test is unnecessary and redundant.
@@DrBrandonBeaber Absolutely! There was no need to test me for EBV when I was being diagnosed for MS, especially that 30 years ago, when I was in my late 20's, I spent several weeks in hospital with quite severe mononucleosis. It was 12 years before first symptoms of my MS (now I'm 57, at 6.5 in the EDSS scale). But even this history of mononucleosis, a positive EBV test would have changed nothing in my diagnosis, treatment or prognosis. They could have just as well check the history of auto-immune diseases in my family, air pollution in my area etc. :) It might be a valuable info only as part of some large-scale scientific study. Nearly 99% of people with MS are EBV-positive, as opposed to over 90% in general population. So what?
Hi from Israel thanks dear doctor I hope that every MS doctor will learn from you
Thanks Dr. Beaber! I appreciate the insights especially about the NFLC tests as I have been seeing a lot about that lately. Question about vitamin D deficiency. Low levels of vitamin D have been reported as being associated with osteoporosis and could cause symptoms such as muscle aches, weakness, and twitches. Do you think we should supplement to help with these?
Vickie: I personally take 5,000 IUs of vitamin D3 daily for prevention of osteoporosis. I think the data on this topic are also unfavorable, but it's possible consistent supplementation over decades could make a difference. The risk is very low unless there is a specific contraindication. I don't think it's likely to help with symptoms.
Another Great Video!
Thankful for the knowledge and information you bring to the MS community.
Happy Thanksgiving to you and yours!
Happy Thanksgiving to you and your family as well.
Thank you for this informative video. Of all these tests I have only had two. The vitamin D test just for my own personal knowledge. And the EMG which was the first test on my road to diagnosis. Thanks again Dr. Beaber.
Great video as always, dr B ! I'm curious to know if you think uveitis is mostly related to MS or not.
Also, can a visual condition such as uveitis be seen/caught on brain MRI ? (Silly question but still).
Thank you very much for your time ! 🙏
I have patients with both uveitis and MS, but there is not a clear association. Uveitis is associated with various other autoimmune diseases. Uveitis cannot be seen on MRI.
I don't really understand the rationale of not testing vitamin D just because it's probably not causative for MS. If most people with MS are deficient, doesn't it make sense to test for and treat that deficiency regardless of its effect on MS? For its effects on other health outcomes (especially mood)? When I was diagnosed, there were no detectable levels of vitamin D in my blood. That can't possibly be good for a person, MS or no.
I agree with this. I was also very low. 8 ng/mL. Perhaps the doc would agree if the rational for the test wasnt to diagnose but to catch a common comorbidity.
I am making a comment specifically with respect to MS. Whether or not vitamin D testing or supplementation in the general population is beneficial is beyond the scope of this video. I personally take 5,000 IUs of vitamin D3 daily, and I have never had a blood test for vitamin D. If you wear clothing and don't work as a lifeguard, you are highly likely to have low levels of vitamin D. The actual "normal" level of vitamin D may be as high as 100 ng/mL (based on testing in undeveloped societies) which no American will have without supplementation.
Good morning Dr Brandon and yes I I get blood work done through my neurologist am I primary care doctor every year. One of the things they both check is vitamin D levels of course and it turns out my level is 100 in my neurologist wants me to back off I'm on my vitamin D consumption. When I asked why my nurse practitioner told me did the neurologist said higher levels of vitamin D could cause heart issues and I never heard of that before. Is there a correlation between high vitamin D levels add heart disease?I thanks again for doing this video, very informative as always have a great holiday sir.
Thank you so much for sharing your insight and perspective! What is your opinion of the Octave test and do you use it to determine diagnosis and treatment.
I may do a video on this specifically.
@@DrBrandonBeaber thank you so much. Your videos are priceless. Happy Thanksgiving!
Thank you for your honesty ❤
For EBV, I believe testing for active EBV-reactivations can be very useful with MS-patients who seem to progress. In my experience, once you have the MS-label, most worsening symptoms are attributed to MS, without any other testing. I had 2 EBV-reactivations being misdiagnosed before knowing that. I could have been treated with anti-virals instead of being bedridden 'due to MS-progression'.
As a PT, this is super helpful. Thanks for sharing!
Thanks for the comment. Love your channel.
@@DrBrandonBeaber thank you. Would love to connect with you and pick your brain on DMTs, lifestyle modifications (diet, exercise prescription, energy conservation..etc), and go deeper into your thoughts on Vitamin D. You do an amazing job of distilling down the evidence to practical/applicable tools for those living with MS.
@@rehabhqofficial I sent you an e-mail
@@DrBrandonBeaber Awesome! Look forward to connecting!
Thanks, Doc.
2 positive EMG's (a test I refused to redo because I found it so horribly painful, supposedly due to the peripheral neuropathy), and a normal - looking CT scan (when I visited the ER with the chronic tingling of the hands and feet reaching up to my chest), kept me misdiagnosed for an extra decade or so.
And tingling in the chest would be highly atypical of any brain or peripheral nervous system disease.
+1. The EMG I got did an amazing job of causing me pain and telling me about the carpal tunnel syndrome I already knew I had.
@@brianguppy :(
@@brianguppy Same here, except that it blinded me to the possibility of something else, like MS. ☹️
Unfortunately exactly true.
@@DrBrandonBeaber
What are your thoughts on the Octave MS disease activity test (multiple bio markers)? Thank you
Dr Beaber is the ultimate motivation. I still believe you’ll find the cure to MS one day and then go down as one of those neurologists in history
Do you do video appts? I’m in CT and was dx with ms in 2006 no lesions up until now, mri showed brain stem lesion. Doctors don’t know what to think. My Neuro said it’s too symmetrical and on both of the brain stem. I’ve been on copaxone since 2009 and stopped for 3 months and had this relapse. I’ve had 3 spinal taps since dx in 2006 all came back with o bands. I was tested for mog, nmo, sarcoidosis everything. My relapses which were rare are severe nausea, extreme runny nose upon waking up, brain fog, anxiety. Now She wants me to have another emg( had one in 2013) it said Mild neuropathy. Also have to see a vascular Neuro. Good news is the lesion was big and within a month it’s significantly smaller. I don’t know what else to do!
Diagnosed with MS at 55.
Never had MONO but I did have that Coof vaccine and booster.
I’d love thoughts on the atrophy scans, like Neuroquant and similar testing.
Great video, Dr. Beaber! Do you think a reason for excessive tests could be a profit motive? I'm assuming each individual thing in a blood test has a dollar amount attached to it, and it has to be paid by someone--either the insurance company, the government, or the patient.
For the most part, no. Doctors would not see any monetary gain from ordering blood tests and MRI scans. The exception might be electrophysiologic tests (SSEP, BAER, VEP) or possibly OCT where providers can self-refer and bill Medicare. The insurance company (or government if we are talking about Medicare) loses money if excessive tests are ordered.
Certain infections lower your vitamin D levels. They way to get the vitamin D level up is to reduce or eradicate the infection.
Thank you, Dr. Beaber! A very informative video, as usual. :) I'm happy that my neorologists seem to share your view. But I have a question/comment about the last item. I understand that OCT is unnecessary during routine visits, but it seems that in some cases it is useful/required. I am in the process of getting qualified for Mayzent therapy and the ophthalmologist recommended OCT testing (I have a history of two optic neuritis and neovascularization in the macula +20 years ago => I am nearly half-blind). As I checked later, Novartis recommends physicians to include OCT tests of the fundus before starting Mezent treatment in case of patients with prior retinal diseases etc. They also recommend to repeat the test after a few months of the therapy.
For S1P receptor modulators such as gilenya and mayzent, OCT monitoring is recommended due to the risk of macular edema as your suggest.
I had the EMG/NCS done ordered by my primary doctor before she ordered my MRI. My symptoms at time I went to see her was numbness and weakness in my legs/feet and arms/hands. She did say she said it sounded like MS immediately but ruled out other things I guess. I hope to never have to do those again 😬
I have been asked to test NFL after 3 ocrevus infusions, what should I do
Hello Dr Bieber. I agree with only doing tests that are required to diagnose the disease and determine the rate of decline. Can you do a video that describes what an older person might expect moving forward (63) and if you are watching any DMT that could be a game changer in the next few years? 🙂
You may appreciate this video on bruton's tyrosine kinase inhibitors which are promising: czcams.com/video/PMYoPUaMAPQ/video.html Older people with MS are less likely to have new MRI lesions and relapses, but progression is highly variable from person to person. Some people are remarkably stable.
Thank you for sharing
I wouldn’t say sNfL has *no* clinical value. One use of sNfL is to rule in MS disease activity in the setting of ambiguous clinical symptoms and no other plausible causes of axonal injury except MS. To illustrate, there was a case series of serial sNfL levels in ~15 alemtuzumab patients, in which two patients reported new symptoms, had worsening disability, but were not classified as relapses because there were no MRI changes, even thought there sNfL levels spiked through the roof. This shows how, at the very least, sNfL can be helpful adjunct to clinical interpretation, even if it’s prognostic value in individuals is still unclear.
A couple of points. 1) A multiple sclerosis relapse is a clinical diagnosis and has nothing to do with MRI findings. Usually, an MRI scan is not performed at the time of a relapse. 2) The evidence that that there is no strong correlation between a multiple sclerosis relapse and rising neurofilament light chain levels is simply overwhelming. Please see this data studying this exact topic: www.ncbi.nlm.nih.gov/pmc/articles/PMC7318095/figure/acn351060-fig-0002/ There is too much overlap in levels between those with and without an attack.
Are there useful videos on spastic paraplegia?
Could you, please, give some advices for parents of children with MS. And make such video like you did for treatments of adults and comparising of medication.
LOL, what a pleasure to hear such common sense! make the Dx with History and Physical. confirm it with the necessary.
Thanks :)
Excellent video! Especially from a neurologist living in resources rich conditions. I live in a developing country where clinical diagnostic skills matter. However unnecessary tests are advised here as well. On the other side, I heard about a consultant physician(She would have retired by now) in a tertiary care hospital, who was against CT scan in stroke patients. Wanted doctors to assess and diagose clinically. Doctors used to hide CT scan from her. Very odd!
My teacher who is now professor of Neurology said that take Multiple sclerosis as nightmare and disease modifying agents are fraud. He is very good at clinical skills and has treated many MS patients. At the time of his statement only few years had passed after availability of Ocrevus in my country. Very few patients are affording for Ocrevus. So probably he lacked experience. He probably changed his views later after about two years when he advised Ocrevus. Above two situations are exceptions and were beyond my expectations expectations..
Not getting a CT in the setting of acute stroke is dubious because it would be impossible to consistently clinically rule out hemorrhage.
Very good video. I’ve also felt there’s not much point doing a test if it won’t lead to a decision being made about treatment. I have not taken medications for MS for many years, and have had very stable MS. It’s been nearly 10 years since my last MRI, and I always thought I’d get another one if any promising/rational MS drugs became available to address prior damage (for instance to help remyelination, or to suppress EBV). Next generation medications still seem years away. My neurologist keeps badgering me to get a new MRI…and I am tempted just to take a look. Do you think I should decline an MRI?
Why would you decline an mri? This puzzles me why people think they know more than the medical professionals. Okay, they’re not living with the disease, but they know how to interpret the diagnostic/monitoring tests.
And wait, there ARE ms drugs that help slow progression. Remyelination is a whole other thing. DMTs are to slow progression. Remyelination is a whole other thing. But then again if you’re in a country where insurance companies dictate what treatment you have, that’s very unfortunate. Become an expert on your own condition. When i was diagnosed i ended up doing a degree in medical science. Helped me understand alot more about the complexities of the condition
@@emilybarrett464 I am a scientist also. The reason I'm considering declining another MRI is the reason Dr Beaber gave in this video - in my scenario the result wont be used to make any decision so it could be a pointless test.
@@emilybarrett464 if your progression is already so slow you'll die of old age before you experience another symptom...is it worth risking some very serious side effects (like cancer, PML, etc) by taking immunosuppressant drugs? Each person has a different progression rate. The same treatment regime is not always suitable for all.
Why would you decline an MRI? I can tell you why. Because if you don’t need it it is unnecessary to expose yourself to that much radiation. Radiation causes cancer.
My MS Neurologist wants to do the NFL blood work if we think we having a relasp but only for knowledge (since it takes awhile to get results)because I'm already on a high efficiency DMT. Other than that there's not much to do if I'm having a relasp because I'm also had a large brain tumour and I will not take steroids unless I really really have to.(also need a hysterectomy)
I also take Vitamin D because I'm 48 and female, looking to not have bone issues in my future and live in an area where we have colder winters.
My family doctor agrees test it once awhile and my daughter even was feeling really tired and her vitamin D and iron levels where really low.
I do believe having right levels helps prevent stuff in the future.
I have multiple sclerosis since 2002
here and Tuberous Sclerosis Complex (TSC)
but the Tuberous Sclerosis Complex (TSC)
was undetected for decades
I had that test also, whetI was being worked up for MS. It was neg
Interesting. When I search PubMed for "multiple sclerosis," I sometimes get articles on Tuberous Sclerosis. there is no known association. TSC is sometimes diagnosed in adults and can be very mild.
Thank you!!!
Thank you for this informative video. The reasons why (not) to do a test can be enlightening!!!
😂 "just keep the blood in your veins"
Thanks I got a good needed laugh
But I'm grateful you put this video out!
YEAH... I was seeing a naturopath at the time I was diagnosed ms. She said my EBV was active. I went on monolaurin for 9 Mos. Retested. Hmmm... still active and the numbers still high. She wanted to place me on more supplements
I took my blood test results to my neuro and he says I have chronic EBV. It was not active and you can't get rid of EBV.
So much $ wasted and being taken advantage of being newly diagnosed ms and vulnerable. I just kept tanking.
:)
I'm not sure how I feel about this. However, I've got a feeling there may be a corollary between unneeded testing and a monetary based healthcare system. On the flip side, insurance companies sometimes deem needed tests as unnecessary. In a sense, it seems like a delicate balancing act. Although, as a patient I would expect that my neurologist is able to consume an abundance of information, whether it's filled with superfluous testing or not, and come to a sound conclusion regarding my healthcare decisions. In the same stroke, the medical facility where I seek care (MS specific) is like a meat factory. In other words, I could see why you feel this way about certain diagnostic tests. What I am really surprised at is that the dated "neurological exam" is not at the top of your list. It seems there are many tests that have been developed that are far better at determining a patient's deficits. But, I'm just a guy on the internet. I have watched a ton of House episodes, however. It's not lupus. It's never lupus...
It's impossible to prove this to you, but I'm very confident excessive testing is not helpful. There are countries where the rate of MRI scans per person per year is less than half the rate in the US, and they have cheaper health care and better health care outcomes. In theory, a doctor who orders twice as many tests could spend twice as much time reviewing them. But in practice, they spend the same amount of time and miss things and make errors.
What do you think about MRI brain volume measurements? (I know it's not technically another test since you're already getting the MRI). Is this another example of a test that's useful at a population / study level but not so useful at an individual level?
A brain volume measurement is mainly helpful when assessing atrophy while on dmts
Same question !!!
I had obscenely low vitamin D. After 6 months of taking a supplement, my levels went up to normal. I have maintained a safe level ever since. I really don't understand how you can say that supplements don't work. I certainly did not start baking myself in the sun, and I gave up drinking milk when I found out I have MS.
Certainly supplements raise vitamin D levels. The question is, "Does taking a vitamin D supplement have a clinical benefit in multiple sclerosis?" Unfortunately, numerous randomized trials suggest it is not helpful.
Hello doctor B,
What are your option about SPINAL TAP, is it necessary to be done for every one with MS.
I had one it went bad. As a ER nurse I have assisted many LP's.
Mine 3times!!! Now fluid😡
My new neurologist wanted me to do it again.I said no thanks. The McDonald criteria
Lists spinal tap
I found that not always necessary for diagnosis If you have a true neurologist, he can diagnose the MS as for me without LP. RRMS.
My opinion is that it is usually not necessary, but it can be helpful if the diagnosis is unclear.
My neuro told me my MRI was so classic for MS with many lesions there was absolutely no need for a spinal tap. That made me very happy.
@@Jessie_Hope my case was the same, but in my country SPINAL TAP is one of research's that we have to take/made to prescribe medication , my opinion is that is unnecessary.
A nerve study was suggested. What is this? I think it sounds pointless as my symptoms are not just in one part of my body so I think it is central not peripheral. I believe I need MRIs - cervical spine, thoracic spine and brain with and without contrast. I could not get in to see a neurologist so I saw a nurse practitioner who seemed inexperienced.
Great video- it’s always good to know what we ACTUALLY need or why we would need it.
#Sharingiscaring
Good doctor 🙌
It appears only the Buxton 2010 trial had significant Vit D supplement of 40,000 IU / day. In that study they reported 2 "clinical benefit outcomes" from 49 participants over 12 months. This may be significant depending on the participants relapse rates. I did not drill down into the Buxton trial...stay tuned.
These were all small trials of 23 to 71 particpants. Except for Buxton, the others titrated with 3,000 to 6,000 IU per day...and in one case Shaygannejad 2012, they supplemented with Calcitriol (not D3).
I found these results in Table 4 of the CochraneLibrary. IMHO keep taking your 5,000+ IU per day...I think you are on the right track.
This is the citation of the butxon study: www.ncbi.nlm.nih.gov/pmc/articles/PMC2882221/ There were no statistically significant differences in relapses (table 3). There was a statistically significant difference in proportion with increased EDSS amongst people completing the trial (favoring treatment). However, a more proper way to do this is intention to treat analysis to avoid dropout bias. I should note that the dose of vitamin D in this study (∼10,000 IU/day) is higher than in the studies in the cochrane analysis I posted.
What about CT scans for checking the level of atrophy in a brain with significant white matter disease/lesions. Also, when I was first diagnosed with MS my vitamin D level was almost nonexistent. It is now in the low normal from taking the supplements for about 15 years.
An MRI of the brain would be a better test to look for atrophy.
Thank you for mentioning the ct scan not being diagnostically helpful. Presented to the er in 2016 with bells palsy and other symptoms. CT was normal they said. Went home grateful I didn't have a stroke but.....
Happy holidays Dr. Beaber!
I've seen a CT ordered for bell's palsy multiple times
Do you have any experience with treating Parsonage Turner Syndrome?
Yes.
@@DrBrandonBeaber Steroids vs. NSAID’s ?
@@brianthompson9241 Typically, steroids (oral prednisone) is used to treat parsonage turner syndrome (brachial plexus neuritis). I have never heard of NSAIDs being used to treat this condition.
@@DrBrandonBeaber Thank you.
I’m this case nsaid we’re chosen because the PTS was a reaction to a ACDF surgery. Steroids were avoided to not negatively effect recovery from the surgery.
@@brianthompson9241 I see. That is a unique circumstance.
Doc. I was diagnose with AIDP, they did an MRI scan on my cervical spine they see nothing, they did spinal tap on me and they said its is clear and they said i have normal protein.. they also did some Emg test and all are negative. I am afraid that it was MS because I feel some tingling on both my hand and feet even on my scalp something crawling, I also feel mild muscle spasm on different part of my body and legs and sometimes joint pain. I am not convince that this is AIDP and now I'm hopeless 😢
I can't give you advice, but typically in a spinal tap done in AIDP (guillain barre syndrome), protein is elevated, and in the nerve conduction study (typically done with EMG), F waves are prolonged, indicating demyelinating polyneuropathy.
most problems come from the "spinal tap". Done wrong can mess you up. How important is it? My opinion - not much.
Given advances in MRI, my opinion is that a spinal tap is usually no longer necessary, but there are exceptions.
Thank you for your opinion on unnecessary testing for MS patients. From a cost perspective the idea of a “less is more” approach is welcome. Another video filled with helpful information!
I have refused any further MRI’s. When my reports say “too many lesions to count”, I don’t see the point. If I’m having a relapse and they’re looking for an enhancing lesion, I’ve read it inly lights up for two weeks. MRI’s cause me so much anxiety that it’s not worth it to me. And yes, I do take valium to get through it. That doesn’t help for the days or weeks leading up to the test.
I have no problems taking the MRIs. I used to have anxiety with them but after having so many they don’t bother me. What I do have a problem with however is the amount of radiation I’ve been exposed to over the years. It’s ridiculous. The rates of cancer in this country are so high anyway and even though I try to have a healthy lifestyle to prevent it radiation is a huge cause of cancer.
Very informative video but one thing forsure is the neurolagy side should still be more open to eye doc help with Oct since there's still very little understanding of ms related intermediate uveitis .... as this can also be a outcome for peoke who are having vision issues but not showing O.N on mri ..... as intermediate uveitis can cause C.M.E the O.C.T is a grate option to help find other ms complications ..... i thi k what's hard is uveitis is already rare so when neros see only 3 percent of ms patience have been seen with intermediate uveitis they dismiss it when really ots already rare but when eye docs see 60-80 percent of there Intermediate uveitis cases from ms patience it shows me we should be remebring to keep it I mind as so meny peole with ms don't even think to go to the eye doc and most neurologist will only look for on and not care of this connection I had tk go through so meny test and no help with the uveitis till I actully had new lesions on mri and when we switched to ocruvus my ms Associated intermediate uveitis actully got better and when it's not do to ms this med dosent usually help at all .... but your right visual evoke potential has been pointless only showed borderline damage to optic nerve from a mild form of O.N on the optic disc ...... but I went through all the other systematic illness test just for the truth to be it was my ms that cuases the Intermediate uveitis.... so really Oct is still I. The air for me cuz of it wasn't for that test I wouldent have more proff of my diagnosis ... they even say if someone developed Intermediate uveitis they have a 5 percent chance to develop ms in the next 5 to 10 years ....
Interesting. I do also have uveitis in both of my eyes. My eye doctor AND neuro don't think it's related to MS since my brain MRI showed no lesions at all. They seem to think it can be idiopathic or caused by something we don't know. I guess that if uveitis was MS related, it would have shown on the MRI.
@alexandreturgeon465 it's true forms of uveitis can be idiopathic but when it's activation is connected to relapse activity or able to get undercontrol with meds for ms the chance of it being idiopathic and not do to the ms is small .... this is what makes medical science so cool alot of times it's about the way to find the answer.... I have a friend who has has a few episodes of intermediate uveitis and had clear mri ... and my eye doc even was more sure it was something else even said a illness called VKH( if he hasent even thought of that has a possablility) ..... it wasn't till we changed my ms meds and he see my uveitis actully get better after numerous eye shots and steroids.... he was so surprised when it happened as even said I had read about it but I was his forst case he seen .... if you had the lisons they probably would have still keep there finger on the probability of ms but really only 5 percent of peole with uveitis will go on to develop ms .....
@alexandreturgeon465 it's also how they treat uveitis accoceated with things like lupus or sclarederma (first test he checked for ) they treat the underlining autoimmue illness and the uveitis gets better so when that happened after I switched to ocruvus (not a common uveitis med but works best in ms) Mt uveitis got more under control and vision actully got better
I was "fortunate" in that I have epilepsy and an MRI revealed the lesoo
Can an EMG test the level of neuropathy caused from the MS?
Although people may colloquially refer to numbness due to MS as "neuropathy," the actual medical term "neuropathy" refers to injury to the peripheral nerves, completely different from injury to the central nervous system as in MS. Someone with MS could have profound numbness/weakness but a normal EMG/NCS. As explained in the video, it is not a helpful test in MS.
I did the vep thingy left my head and hair with sooo much glue 😭
EBV+ doesn’t allow me to have tysabri
So it seems necessary
I believe you are thinking of the JC virus. Close to 100% of adults with MS will test positive for EBV.
Txs! Well, the causation of MS is not found yet. It's hard to have good treatment without addressin the causation. All DMTs r just for the symptoms. I wish i was tested for causative factors of MS dx & attacks.
My understanding is that DMTs AREN'T for symptoms and that they do address causes of disease, at least indirectly? They modify a part of the disease process. I agree though, I wish we understood the mechanism of MS better so we could create more targeted treatments that more directly addresses the root cause.
@@MrMikk532 Yes! DMTs are for decreasing inflammation. Inflammation is one of the consequences of pathological process, not a cause. Someone may have inflammation caused by toxicity, another person might have it due to virus or genetic predisposition or certain lifestyle. Shutting down the immune system with lifelong treatments don't address what's causing it to act out in the first place.
ATA188 was stopped couple of days ago 😮
Yes. I filmed this video prior to that.
The problem is not a lot of doctors have good judgment. How dumb one has to be to put a asymptomatic patient on TNFa blocker . That’s insane .
Excellent video. however there is one point of time when EBV serology is helpful, and that is in someone transitioning to progressive illness (SPMS). In my experience, my positive EA responds to antivirals and reversed what had looked like progression. IF comorbid conditions are not identified, they are not treated.
This is interesting, but I would want to see if antivirals are actually beneficial in a proper randomized trial.
should add, I'm a research chemist by trade and understand scientific method. But in choosing your trial participants, unless you happen to find some with positive EA or IgM, the trial outcome will be "antivirals do not help MS". This is exactly the issue with current shedding trials. I foresee a large group of folks in early progression tested for ALL the virus (CMV, HHV6, EBV) plus bacterial infection ... we don't have symptoms.
@@kkaci5 Of course someone organizing the trial is welcome to select participants who are most likely to respond to treatment.
Your camera is dying. Maybe it's my MS but the background changes color every second.
I did notice this but I don't know how to fix it.
The Cochrane review on vitamin D is non-sense. Give too low a dose, and no you wouldn’t expect an effective result.
I’ve been on high dose vitamin D therapy (76k IUs per day) for the past year and a half, and many of my lesions have faded and all my symptoms improved.
My neurologist was dumbfounded. I wasn’t.
This channel would benefit from a more realistic/cynical view of pharma.
Do you think research on a basic supplement like vitamin D will be allowed to replace all the bogus drugs for MS?
There’s way too much money involved.
Hyperbaric oxygen chambers also reverse MS (research dating back to the 70s). Also a low budget MS reversal option.
I bet you dream finding cure for MS 😆