The Death of Clinically Isolated Syndrome
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- เผยแพร่เมื่อ 6 ก.ย. 2024
- This video, filmed while walking in downtown Portland, explains why the concept of "clinically isolated syndrome" in the field of multiple sclerosis treatment no longer exists.
Multiple Sclerosis Diagnostic Criteria [Neurologist Explains]: • Multiple Sclerosis Dia...
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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.
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I had an Optic Neuritis attack in April 2021. My neurologist gave me the choice of whether or not to have a spinal tap. Without a spinal tap, I would have a diagnosis of CIS. With a spinal tap there was the potential for greater clarity. I opted for the spinal tap, which returned with 13 CSF-specific oligoclonal bands and led to my MS diagnosis. I didn't want to take a "wait and see" approach, because another attack is just more brain damage. No thanks! I knew that I'd be taking an aggressive treatment option if diagnosed with MS, so it was worth it to me to get that clarity and start fighting back.
Your situation describes perfectly the value of a spinal tap in specific situations even though we do them less often overall.
@@DrBrandonBeaberspinal tap should be compulsory to rule MS out in all cases of CIS
I had my first discernible relapse in 2006 with a lesion in my spine. The spinal tap came back inconclusive so no diagnosis. I followed up with my neurologist for two years with exams and MRIs every six months and he declared it a “monophasic event”. I did make some significant diet and lifestyle changes and went 10 years before experiencing more symptoms and then was diagnosed with. I do wonder if I had been diagnosed in 2006 and started a DMT back then if things would be different now. Luckily I am doing very well with very manageable symptoms.
I'm glad you are doing well. The diagnostic criteria have changed since 2006, so as I said in the video, most people previously diagnosed with CIS would just be diagnosed with MS based on modern criteria.
I remember really strange nerve pain in my legs just after I had my oldest son in 2001. He and my husband were diagnosed with Celiac in 2004 so we started eating gluten-free at home. I think I had a relapse in 2016, but was able to rationalize and kind of ignore symptoms. In 2020, I started a new job and started eating out more and eating more gluten. I'm convinced that brought on my vertigo and facial numbness and ultimately diagnosis in 2023. Diet makes a huge difference.
@@beckypike355 diet definitely makes a difference!
I was dxd in 1993. At that time, they called it "probable multiple sclerosis." At one time or another, there were 6 types of MS, right? RIS, CIS, RRMS (or just RMS), SPMS, PPMS, and PRMS (progressive relapsing MS). Very confusing. The current 3 types of MS (RMS, SPMS, PPMS) could all just be classified as one thing: MS! SPMS and PPMS are treated the same way, for all intents and purposes. My neurologist about 15 years ago just up and told me one day that I had moved into SPMS after an examination. He is retired now, but he was VERY thorough. He would do a full head to toe hands on neuro exam on me that lasted an hour, 3 times a year. Even doing vibration and poking (sharp vs non sharp, and 1-pt vs 2-pt). Hand written notes. I liked that guy. My current neurologist (younger) just asks if i feel any different.
There is strong evidence that MS is one disease. The subtypes refer to clinical manifestations in an individual person, but the actual underlying pathophysiology appears to have similarities in all subtypes of MS.
I was diagnosed with MS straight away but this was such an interesting video on “CIS”. I really appreciate the concern that a CIS diagnosis could have on someone’s life, especially future insurability. Great video, thanks!
Thanks for such great info…smart way to be safe! I have been extremely lucky to have always been treated by outstanding neurologists, so my MS journey has always felt less scary & even though it has progressed, there has always been a strategy to deal with the changes. I was diagnosed in 1993, and truly believe my care teams are how I deal with the reality of the disease in a smart, effective way.🤷♀️
I was diagnosed in 2007 after a severe relapse with CIS. It was then up to me whether to start with my therapy according to my doctor. He said that there is a chance of 40% of not having a second relapse and hence no MS when starting immediately with therapy. The only medicin covered here in Switzerland was Betaferon at the time and to my knowledge until now. After 14 years I have had my second relapse and finally my insurance covers more effective treatment like for me now Kesimpta. So, I agree with you to not make any difference would allow patients to get faster effectice treatment.
Thank you for talking about recurring optic neuritis! I've had optic atrophy for about 10 years now and I was 'diagnosed' with MS following a spinal tap. My eyes are fried although there are barely any WM lesions on my brain. My MS specialist I go to is unsure whether to conclusively diagnose me. Other neurologists and neuroophtalmologists I have seen say it's not MS as I have no neuro deficits besides progressive vision loss.
I was first told that I was withdrawing from drugs. Because I am a nurse. That stress threw me into a giant attack. MRI was clearly MS. Multiple attacks. Ended up going out of town for diagnosis.
Look into Carnivore - proper human diet on youtube...its helping many with MS and other issues. Also vital watch Clint Ober 1 hour docu - Earthing..best wishes ❤
@@user-tm2vc6fj8q Are you also on DMT?
CIS was made for someone like me at high rusk for MS to be able to start treatment early.
My first symptoms were left sided sensory and motor changes mildly. MRIs done in ER showed 2 small inactive lesions in brain and 1 lesion right cervical spine. They did not do contrast MRI of cervical spine, only brain. So do not know if cervical lesion active or not and symptoms left sided not right.
Spinal tap with zero oligoclonal bands.
Pseudorelapses every 4 weeks prior to start of my cycles Karting at least 3 weeks. Started copaxone but had bad reactions and stopped after 5 weeks.
The next summer the pseudoflares turned in to 5 straight months of relapses with new symptoms and 4 new lesions, 2 brain, 1 cervical, 1 thoracic and got my full MS dx about a year after initial symptoms.
Turns out I have progesterone hypersensitivity and allergic to my own hormones. Started DMF, then a hormone blocker, then underwent surgical menopause at age 38. Almost 2 years since my surgery and just about MS symptom free.
I have one large central lesion that looks consistent with MS along with years of slow decline. Two close family members with MS. I asked if an LP would be helpful, but was told to watch and wait.
I have one lesion between T7/8. Spinal tap shows negative for MS.
I have no brain lesions. First Symptoms started this May. I was diagnosed with transverse myelitis Still have full motor control.
Wow, this is Impressive & boggles the Mind ! [in a good way]
Thank-you for sharing !!! I have another Head MRI with GAD coming up in Sept. Last MRI was 7 years ago, white matter but MS Spec. said the 'white spots' were not in the 'normal' area where they usually occur with MS, I have on-going Migraines but other issues too, but Hope this MRI with show something else or at least some updates etc
I'm looking forward to watching more of your Videos - Again, tfs & Hope you're having a Nice Vacation !! : )
If there is a question about the significance of the white matter lesions on your MRI, you may appreciate this video: th-cam.com/video/GNnba5HVvdY/w-d-xo.html
@@DrBrandonBeaber Thank-You !!!! I just watched it, um, Incredible : 0 ... so many things going on re: possible Diagnosis' etc
Again, Much appreciative : ) of your suggestion to view ... Most Sincerely, Cindy
P.S. To clarify my 1st comment, hope I did not come off as upset or angry etc about what the MS Spec told me, she was very nice, and very caring / professional ... I'm just trying to figure out these on-going Migraines, vertigo, tinnitus, being light sensitive, noise sensitive, dizziness, fatigued etc Again, Thank-you ! : )
I got diagnosed about 10 years ago, after ON and 4 cerebral lesions. I had an LP to clinch the diagnosis, and it was negative. Fixing vitamin deficiencies have helped a lot of other issues that were written off. Nonetheless, the diagnosis has stuck...
Had ON in 2017 and diagnosed in 2018 after MRi showed 3 lesions and a tap was positive for OBands. I was diagnosed with CIS but after consulting with my neuro I was diagnosed with MS as I didn’t want to ‘watch and wait’ (at the time the NHS didn’t offer DMDs to CIS folk). Have been on Tecfidera since and have had no new flairs or lesions in MRI.
Great info! I was diagnosed w CIS in 2020 at age 58. About 20 Lesions were incidentally found in an mri for something else. I was shocked. I had a spinal tap which showed 10 O bands. I've been on Tecfidera since 2020. 12 years prior, I had a week long vertigo episode that we assume may be my first & only ms attack. I've never had a second neurological episode, and I've never had new lesions since 2020. So I continue taking Tecfidera (the lower dose) for now. I'm 62 so would love to stop taking it. My neurologist at the time changed my diagnosis from CIS to MS so that the fight w insurance to cover Tecfidera was easier. I've also been told by a diff Neurologist I have Benign MS. Perhaps a follow up video might be whether or not Benign and Radiological MS exist, and if so what criteria needs to be met to have Benign or Radiological MS.
Good explanations. Ty
#Sharingiscaring
I have 1 lesion at C3-4 with clinical symptoms that have improved. O-bands, 4 non-specific white matter brain lesions. No diagnosis, no treatment, just monitoring by MRI.
A second opinion might be a good idea.
I have this exact same thing! 1 lesion at c3. What are your symptoms?
@@melodiehill1781 numbness and tingling bilateral although more in right, positive Babinski on right. Lasted 8 weeks then started to improve. It’s been 1 year and I have no symptoms now.
Diagnosed with CIS just recently. I have a lesion T10 T11 spinal cord, developed myelitis. My CSF was positive for X4 Oligoclonal bands. Since I didn't have another true lesion anywhere...CIS was the conclusion. I'm getting follow up MRI'S every 3-6 months
It’s funny, in my case I have the DIT because of pattern II oligoclonal bands and my high IGG index. I also have optic neuritis. I don’t have DIS tho because I don’t have any brain or spinal lesions. I’m in limbo rn.
I asked an MS doctor if I could get this diagnosis simply to have a label. Going years without a diagnosis is awful. I didnʼt want the treatments or any kind of special treatment, just something to say when people ask why I walk with a cane.
I can certainly understand the desire to have a diagnosis for chronic unexplained symptoms.
I was first diagnosed with functional neurologic disorder and radiologic isolated syndrome in 2023 by two different neuroimmunologists after spending 4 years going from specialist to specialist looking for answers to my neuro symptoms. I have a total of 53 white matter lesions in my brain and none visible in my spine, some are non-specific but several are MS typical and I have an MS lesion in my cerebellum. I have had a spinal tap that came back positive with 6 oligoclonal bands. I have had an array of physical neuro symptoms along with cognitive decline that have gotten worse over the course of 9 years. I started on tecfidera in December of 2023 after pointing out to my neuro that there was a lesion on my cerebellum that he didn't notice (actually that TWO neuros didn't notice even though it was in the MRI notes). I pushed for getting on a disease modifying therapy because I could feel I was getting worse but neuros don't believe me when I tell them what I am experiencing. Curious to see if any one else has been through a similar experience of neuros not being willing to diagnose even though the criteria for MS has been met? Also, still getting new neuro and cognitive symptoms while on tecfidera.
This can be a challenge for two reasons: 1) There is some subjectivity as to whether an MRI lesion is typical of demyelinating disease (explained in this video: th-cam.com/video/GNnba5HVvdY/w-d-xo.html ) and 2) It can be hard to know for sure if symptoms like cognitive changes and fatigue are due to the brain lesions or something else.
I was dxed with CIS two years ago, but for some reason my neuro said I didn’t need to have a spinal tap. So far I’ve only had the one attack and I’ve been injecting myself with Rebif for the past two years.
Can MS be misdiagnosed with an MRI that’s reportedly having “Dawsons Fingers” and several lesions on the cervical spine. Signs of major fatigue (effecting life factors ), and losing their use of their arm for a brief episode?
Thank you Dr Beaber interesting video, CIS is clearly not a useful diagnosis. I have a friend who was diagnosed with CIS 10 years ago and recently developed new lesions and had a significant relapse so was diagnosed with MS and started Aubagio. Have a great holiday!
In your opinion, does this said above apply to RIS as well?
No. I think RIS is an important concept. Video on this topic here: th-cam.com/video/GyxUPJ7mZbY/w-d-xo.html
Excellent info. Thanks.
:)
Should I start with DMT in my case if I have only one 14mm lesion on C2, 3 specific oligoclonal bands and 0 in serum in spinal tap. Brain is clear? My neurologist said me that we will wait what future comes to me but I am really afraid of it.. now 3 months after this episode with numbness left side of body I have weird vertigo and pain in my neck. My neurologist thinks that It is not attack but only cervical trouble and send me home..
What would you do, if ur dx with ms but Borrelia positive in blood 🩸- treating with B cell medication?
Im learning the "whys" MS can be really time consuming to diagnose. Neurologists have to be like patient detectives. I can also see how this might be frustrating for young patients or others who have an initial symptom/s. Great job in the nighttime walking. Get back to enjoying your time off.
Thanks, though this was filmed some time ago.
Currently diagnosed with CIS. One event of ON treated with steroids and complete recovery. A year later MRI findings two T2 hyper intense periventricular lesions with flair. CSF one well defined gamma band. One doc said Aubagio then they said changed their mind and said let’s do watchful waiting. Other doc said CIS start Tecfidera.
For clarification: the MRI a year later for two lesions not present on the initial scan?
@@DrBrandonBeaber yes, at time of ON no lesions were found in MRI brain and then two weeks later they did a optic brain MRI. I’ve since had two more brain MRI’s. The latest MRI in April they found the lesions. I’ve also had one thoracic and two cervical MRI reportedly no lesions.
Well one doc said it’s one lesion the other said it’s two in the same MRI. I’m confused.
So I had an event where I had hand weakness, fingers went numb, numbness on side of head/face. Was checked for stroke but instead found multiple lesions that the radiologist report said indicative of MS. I still have symptoms. However my spinal tap (God that was awful) came back clean. I have had 3 mris over the past 18 months, with no changes. Rheumatology came back negative for lupus or sjogrens. One neurologist wants to treat but second opinion wants to monitor. Thus I am in limbo land and it stinks 😢
Should add, I have psoriasis, so that’s one autoimmune condition. My ANA keeps coming back positive with speckled pattern. Rheumatologist thinks I could have psoriatic arthritis, but I have no joint swelling or stiffness. It’s a real mystery.
Good luck to you regardless of what you decide.
My middle sister kinda had been told she had c.i.s when she forst had an mri but she also had 3 lisons at that time ... she eventually got the rrms diagnosis becuse one lison was a dawson finger and become slightly enhanced later on .... i was considered borderline ms from 2009 to 2012 becuse i only had 5-6 lisons at that time and since my original brian scan was done with a CT and found some kf the lisons they felt it might have been ms or ischema once we ruled out other cuases .... but eventually i had one lison that grew to form a dawnson finger also .... we both had neurological findings on examination .... I had beginning was told I had from my history 3 previous attacks.... but we both have had very mild presentation during our illness course .... we both weren't treated till we actully got the rrms diagnosis as we both have now...... but I like your video for talking about the prossess as it's been so hard for me becuse even now with the diagnosis since I've chaged docs and my relpase in 2021 wasent very ms nornal in terms on seeing enhancements on mri and only what my doc says was a possible slight growth of a lison but he says he was unsure and that's been the battle of my illness ... I still get asked why I'm sure it's ms and not a mimic from my other docs(eyes,rheumatologist, radiologist ect) I feel becuse this new doc has put it out there .... most relapses don't find enhancements but every so often I get a growth of some lsions and recently as he said a possible new one on my c spine but since it's more centered he was still not sure it was ms but since it dident have signs of motion artilifact like blurry lines he was not overly conserd but still up my med to ocruvus.... also since I'm a rare ms patient with uveitis associated to my ms has also made them worried of ms mimic why I'm seeing a rheumatologist but like allways everything comes back normal ... your video shows why it's so hard for thous of us who dint fit completely nornal ms ..... but since my mom and older sister and middle sister have ms and getting trestes for it like ms I'm sure there just making sure.....
I have one lesion at c5 and 11 o bands, my neurologist diagnosed my with CIS.
Oh wow.,a second opinion might be a good thing to look into.
But no lesions on MRI brain?
@DrBrandonBeaber dr said there were spots but in her opinion they were not ms spots.
My wife is diagnosed with MS. First attack ON. 11 leasion on MRI no O bands in spinal tap. She recover with steroids and started Tecfidera. Is is still possible that she will not develop MS?
I can't comment on her situation, but there is some evidence that a normal spinal tap is associated with a better prognosis on average.
Seems like ADEM is just an early MS dx. Dx-ed w ADEM, got Rebif for a year and then severe MS attacks 3 yrs post initial ADEM dx.
Typically, ADEM is a uniphasic illness, but in some cases the first attack of MS could be misdiagnosed as ADEM.
So what’s your opinion on patients who go on to have fewer lesions (as they are remyelinating)?
Holy shit.. Looks like green goblin from spiderman
:) You're not the first person to say that.