Multiple Sclerosis Terminology: Clinically Isolated Syndrome Explained

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  • Опубликовано: 3 окт 2024

Комментарии • 74

  • @sickofitall-72
    @sickofitall-72 6 лет назад +3

    This was my dx in 2010, transverse myelitis and the neurologist at the ms clinic I was sent to later was the first one to use the term ‘clinically isolated syndrome.’ I recovered 100% and went for a number of years without incident until symptoms developed in 2015. I got my ms dx in 2016.

    • @AaronBosterMD
      @AaronBosterMD  6 лет назад

      Thank you for sharing your CIS experience Leah. Thank you for watching!

    • @dermlover1
      @dermlover1 Год назад +1

      What symptoms developed in 2015? Also, what were your symptoms with transverse myelitis?

  • @janelloyd7601
    @janelloyd7601 Год назад +1

    Thank, you again for this invaluable resource

  • @moonlookingforthesun1866
    @moonlookingforthesun1866 4 года назад +2

    I was diagnosed last week having had a clinically isolate syndrome 😅 It was indeed optic neuritis. Brain MRI showed different lesions but non active. But spinal tap tested positive so I was diagnosed with multiple sclerosis relapsing remitting. So weird..
    Crazy to think this was related to ms. Thanks for the information doctor:)

  • @saraha8864
    @saraha8864 3 года назад +1

    Thank you so much for your very informative video. I was diagnosed with CIS Transverse Myelitis on 4th of June 2019. My lower limbs felt suddenly weak and a tingling sensation began at my toes, and from there reached my waist level. It was so uncomfortable, and any contact with my skin felt overwhelmingly painful. Initial diagnosis at a nearby clinic was a probable temporary “brain shutdown “ due to very low blood glucose levels, and that I should get better over the next few days. It was only due to urinary incontinece and a really full bladder that rushed me to the hospital for a Catheter that more studies were done and the Dx was made (brain and spinal mri scans clear, spinal tap clear, no other abnormalities except a low Vit. D level reported). My second mri scan a year later was also clear. I’m recovering with physiotherapy (able to walk and use the bathroom besides the regular constipation from time to time), but according to your video, if everything was clear, can this Dx still be accurate?

  • @rivaldo9rivaldo
    @rivaldo9rivaldo 5 лет назад +2

    Thanks for taking the time to answer questions. Its sad when you are left in the dark. If you have spinal symptoms but a clear brain mri are the chances still 20%

    • @AaronBosterMD
      @AaronBosterMD  5 лет назад +1

      hard to say without examining you and reviewing your MRI scans myself.

  • @pendlecurl
    @pendlecurl 8 месяцев назад

    Thank you for posting this as I have learnt a lot about the diagnosis and prognosis for my situation. The most frustrating part of having a CIS diagnosis in the UK is being completely ignored by health care as it doesn't appear to be a diagnosis as every GP I have mentioned it to looks at me blank and asks if it's MS which of course it isn't, the upsetting part is just because I haven't had multiple attacks (by the grace of God for which I am truly grateful) doesn't mean I don't have any life changing symptoms from the "first" attack 😢. My symptoms are not taken seriously and I have to fight for every bit of help to live with them in order to continue to work full time. I am literally treated as if I'm just making up a bunch of symptoms. As the old saying goes, it could be worse........... I really know it could!!

  • @sheetaleinstein
    @sheetaleinstein 6 лет назад +1

    Thanks for the clarification Doc

  • @benwain4371
    @benwain4371 5 лет назад

    Thanks so much for your awesome educational videos!

  • @trinityclaydon6081
    @trinityclaydon6081 2 года назад

    I’ve been diagnosed with clinically isolated syndrome when I was 18 my first ever symptom was when I was 14… doctors didn’t take me seriously until I told them I’m having an MRI and it came up with lesions. They are going to do further testing to see if I do have MS and I am 19 now…

  • @saraali8539
    @saraali8539 3 года назад +1

    I was told today I have CIS, I had a MRI done on brain and have 2 lesions In a area that is associated with MS, also had a my CSF tested with positive O bands that were counted at 10 bands. My spinal MRI was taken at a different hospital than the one that performed my brain MRI and their not sure if there is a lesion or not on spine, so recommended in few months to take another MRI with their equipment. Just curious if I have the lesions and the positive bands in my CSF wouldn’t that classify the 3 areas you discussed. I am learning a lot watching your videos and I really am happy you make these. Very informative!
    I forgot to mention the symptoms I have been having is numbness that started in my feet that spread to my whole lower extremities. They have been constant for 3 weeks straight. At one period of time years ago I lost vision in both eyes that only lasted for 15-30 min but since then my left eye always has a black spot. So I am very confused on the CIS.

    • @nyrhockeychick4life655
      @nyrhockeychick4life655 2 месяца назад

      I know your comment is old & God only knows, given the trash fire of the American healthcare system; if you ever found out. There's a blood test for optic neuritis. Sounds like you experienced that. I had a similar episode in 2017 (hospital, cath -3 times OMFGGGGG 😫) and all. It's been 7 years and I've been in constant pain. In 2020 I started the numb feet I thought was sciatica; tingly hands, burning feet when it's hot; BREAKING legs like "holy shit! I actually can't walk! Check out lefty it twitches when it's hot.....SOMEONE PLEASE HELP ME!" I get dizzy when hot, memory is over lol, subcortical, occipital & periventricular lesions "with a venular appearance" (CENTRAL VEIN SIGN IS HALLMARK MS) and a ton of CC involvement. Since my rodeo of medical hell began once I made it abundantly clear in 2020 that I CANT WALK! I've never enhanced w contrast. However, brand new horror symptoms started happening in June/July 2023 & same time this year, just way worse with my legs. All when it's hot or especially hell humid out; but nothings wrong though. I'm all good. In 2021 They found a 2mm cervical & thoracic syrinx like cavity (I'm looking at you NMO); I developed CRPS1 of the left foot (that sucked so bad OMFG!) and now bc I wanted to be treated at a hospital closer to me; my punishment is this asshole neurologist trying to take the MS dx away from me. I only know about NMO being a blood test bc he decided to repeat all the tests I've had done 8 times already. However, this time NMO was on there & given no NS or Neuro can figure out why I have an idiopathic syrinx (it's more of a cord dilation); I've decided to schedule the bloodwork ONLY bc I'm curious about NMO being the underlying cause. I do not have spinal cord lesions under 3 vertebrae to my knowledge. Also, small C&T Syrinx's are a much more common spinal cord pathology in MS than is ever reported & a ton of chicks in my MS support group have them + I read a few medical papers & case studies proving they are.
      So In 2017 when all that stuff happened to me (the cath & the migraine I'm not sure was a migraine bc I went literally blind. Not the aura.); the syrinx-like cavity appeared a few months later. It became a bit more visible on MRI by 2021 - the jerk off radiologist in 2017 never reported it & my GP wasn't looking through the images. He's a GP & sent me to see if h had a cervical herniation (yup. Still there too. Weird). Longest story ever (sorry life has SUCKED & sometimes I need a place to put my rage bc of it. Sorry); I'm going for the blood test because I don't have the precious all knowing shitty little spinal cord lesions they want. NMO could deffo be a possibility. I wonder what happened with you. Hope you're okay.....enough. There's like no help. It's seriously amazing

  • @rayraysears7468
    @rayraysears7468 5 лет назад +2

    Thank you so much for all of you informative videos! I was diagnosed with CIS after a bout of optic neuritis and tremors back in July 2018. I have “several non specific spots in the white matter from demyelinating disease or chronic migraine” and spinal tap revealed 5+ oligoclonal bands in csf not in serum. Neurologist wasn’t sure. Ms specialist diagnosed CIS, finally wrapped my head around it and understood/ accepted. Went back to regular neurologist 2 weeks ago after 6 month repeat MRI, now she’s saying no CIS.. no MS you are fine. Spots are from ‘migraine’ (29 yo no migraine history) bands are normal and are no indication of anything...? (Could this be true??) Optic neuritis was probably a virus or something bad I ate??? Developed weird nystagmus type thing and now having bladder problems. Dr dismisses everything.. you are fine.. lose some weight. So confused. Thinking about blowing off my appointments. Why bother.. I know my symptoms are real but I feel like I sound like a hypochondriac.. 😔 several mri, spinal tap, 80+ blood tests,.. I give up.. 🤷‍♀️

    • @mmdaviesmd
      @mmdaviesmd 5 лет назад

      @rayraysears I have a very similar story but not had spinal tap and the MS neuro I have seen twice (who's bedside manner leaves a lot to be desired) is trying to label me with health anxiety because I try to advocate for myself as I know my symptoms were real and now they appear to have almost disappeared apart from mild altered sensational and fatigue which are now much greatly reduced and happen less frequently. I believe what I have experienced is CIS but don't know what else I can do to prove this as my latest MRIs have been clear except for lumba wear and tear. I hope you are OK and feel you are being listened to or have some answers.

  • @lorraineophoff4984
    @lorraineophoff4984 2 года назад

    Thank you!

  • @bghetmiri5736
    @bghetmiri5736 6 лет назад

    Hi Dr Boster can you please speak about the importance of Elisa alergy food test and the foods we should totally avoid with ms. Thank you for informative videos.

    • @AaronBosterMD
      @AaronBosterMD  6 лет назад

      I'm not sure if you saw this one yet: ruclips.net/video/3M5pSb9SRJU/видео.html Bahareh?

  • @fishyeardley1920
    @fishyeardley1920 Год назад +1

    Hi Dr Boster, I'm in the uk. I have been diagnosed with CIS. I have brain lesions (7-17 depending on which neurologist is looking at my mri) and one on my C3 spine, i have O bands in my csf and I have had one relapse 3 yrs ago which led to a diagnosis. I have been told that I have to wait for another relapse before I get treatment. What can I do to get help? Bearing in mind that the nhs is in crisis and waiting lists are very long for any kind of treatment at the moment. I am increasingly depressed and anxious about my predicament. Thanks.

  • @rachel107rg
    @rachel107rg 2 года назад +1

    What about positive bands in spinal fluid and CIS but normal MRI? 🤔

  • @karenpny
    @karenpny 6 лет назад

    Dr. Boster, do you believe that some spots do not show on a spine MRI? How can someone have disability (legs/limping etc.) with no spinal lesions? Let me guess, progression? So complicated! Thank you for the videos, always learn something new!

    • @AaronBosterMD
      @AaronBosterMD  6 лет назад +1

      A person with MS can have damage to brain and spinal cord. Damage along the motor pathways in the BRAIN will result in leg weakness. So yes, it is possible to see those symptoms in the absence of cord disease. You're right, however, it's more complicated that just that. But I hope this helps nonetheless!

    • @karenpny
      @karenpny 6 лет назад +1

      Aaron Boster MD thank you! Again, I learned something new.

  • @olivezaitun
    @olivezaitun 5 лет назад +2

    Hello doctor my husband mri showed the scars but he fell 17 years ago in a polo accident the only symptoms he’s had all these months is numbness in his legs now his Csf results is showing positive oligocional bands the drs dx was clinically isolated syndrome help!!!!

  • @wajabi
    @wajabi 5 лет назад +2

    Would a case of West Nile virus be considered CIS? First I was diagnosed as ADEM because of the infection, In my case 11 years later and a spinal tap ultimately resulted in MS diagnosis. But no new lessions. Why?

  • @Flufyduck67
    @Flufyduck67 3 года назад

    I was diagnosed 2 years ago with MS. My neuro retired and I now have seen a new one this week. He now decides, as he spoke over the top of me and didn't give me a chance to speak I have CIS. Yet I still have all the same symptoms etc. Now I am very very confused! I have lesions on my brain and one at C1&2. I feel like I don't know where I'm at now.

  • @JustbeSmilin
    @JustbeSmilin 6 лет назад

    Thank-you so much for your videos, Dr. Boster! They have been very helpful. I thought of a question for a video, but maybe you've already addressed it and I can just haven't seen it? My question is why is much emphasis given to the MRI, when symptoms aren't necessarily linked to it? My MRI has been stable for the past 9 years, although my symptoms have progressed quite a bit (EDSS 6.5). So, why is the MRI so critical in deciding on treatment, for example?

    • @AaronBosterMD
      @AaronBosterMD  6 лет назад +1

      The MRI plays different roles, and has different value during different phases of treatment. It's super important, for example, to aid in an accurate diagnosis. It's very helpful in monitoring for subclinical disease while on a given DMT. That utility is probably not as helpful later in the disease process, but still helps.
      A second important consideration is that seeing new MRI activity (new / enlarged T2 or new gad lesion) is always bad. But lack of such new findings doesn't mean everything is ok. That's because conventional MRI doesn't capture all aspects of MS pathology.
      Thank you LemtradaVision for watching

  • @PM-dq5mf
    @PM-dq5mf 3 года назад +1

    Thanks, Doc for the video. I was diagnosed with CIS in July 2019 and have been taking Avonex DMT since them. No new lesions and symptoms have reversed. Quick question: When can I stop the weekly injections? Or is this a lifelong thing? PS: I'm a 30 yr old male.

    • @heshamadel5819
      @heshamadel5819 Год назад

      That's exactly my medical case.I will be thankful if you shared your case now with me

  • @cinemike8207
    @cinemike8207 3 года назад +1

    Hello Dr. Boster, I recently had an MRI for totally unrelated headaches and they discovered some white matter lesions that appeared to have been through a demyelination process. They said that the largest lesion was about 0.5cm in diameter which I guess is pretty small. So they ran a bunch of blood work and all of the results were at healthy levels, including my Vitamin D level. They ran a follow up MRI of the brain and spine with contrast and found no lesions on the spine and no changes to the lesions in the brain. My understanding is that this indicates that the lesions are older?
    Anyways, there doesn't appear to be any signs of active inflammation and I've had no symptoms at all. I would have had no idea that these were even present if not for the incidental finding. So my question is, does this even qualify as CIS? I know that you categorized a few branches of CIS but I don't seem to fit into those because I have none of the symptoms. Is it possible that these lesions are the result of something that my body fought through many years ago and has long since been resolved? Is there hope that I won't have any further episodes? Thank you.

  • @nataliaw9958
    @nataliaw9958 5 лет назад +2

    Thank you so much for this video. I am so lost with all the information… How does this case look like if you are diagnosed with CIS, have 2cm lesion on your spinal cord + one small in brainstem and oligoclonal bands in csf ans serum?I would like to get on medication, but doctors seem very reluctant

    • @nataliaw9958
      @nataliaw9958 5 лет назад +2

      I would like to add that my state and MRI haven't changed since July 2018. I have had already 3 MRIs… It seems like I'm forced to wait for something worse to come before I can get any treatment or any other tests or exams and this waiting is extremely frustrating… I really don't know what to do

    • @AaronBosterMD
      @AaronBosterMD  5 лет назад

      we could call that CIS at high risk to convert to MS. At our center we would discuss initiating DMT for a situation like this.

    • @AaronBosterMD
      @AaronBosterMD  5 лет назад +1

      Keep being monitored for sure Natalia!

    • @nataliaw9958
      @nataliaw9958 5 лет назад

      @@AaronBosterMD Thank you, you gave me a motivation to continue trying to get on DMT :)

  • @majdi88harrous
    @majdi88harrous 5 лет назад +2

    I have optic neuritis and mri lesion periventricular white matter spot about 7 how many time it takes to develop to m.s

    • @AaronBosterMD
      @AaronBosterMD  5 лет назад

      without seeing your scans I can't comment but I would talk to your provider!!

  • @itsjustandy_1367
    @itsjustandy_1367 2 года назад

    so weird because i had an MRI in July and they found one lesion near my fifth cranial entry but other then that everything looked normal Spinal came back mormal and only one Band was found. but i was diagnosed with CIS 🤷🏼‍♀️

  • @nicolewilson2512
    @nicolewilson2512 Год назад

    Hi Aaron, I have had several attacks of transverse myelitis and brainstem syndrome over the last 5-10 years and I finally got to the Barios MS Clinic in Toronto. My history and my MRI say MS but my lumbar puncture is not really definitive. So my neurologist is saying probably clinically isolated with 80-90% chance to develop to active MS and wants to start me on tecfidera. I was wondering if you could give me your thoughts.

  • @tkyoth3txg3r78
    @tkyoth3txg3r78 6 лет назад

    Hello Dr B. Thanks for the excellent videos. Is there any data on the likelihood of progression from cis to ms in a person with a clear mri but positive ocb? Thanks

    • @AaronBosterMD
      @AaronBosterMD  6 лет назад +4

      yes, the risk to convert is higher if CSF is "positive", independent of the MRI scan. So in CIS + normal brain MRI + positive LP = risk is closer to ~30-40% as compared to CIS + normal brain MRI + negative LP = ~20%

  • @Tns85
    @Tns85 6 лет назад +1

    I dont have a positive spinal fluid. I was diagnosed off the lesion on my mri and my physical tests

    • @AaronBosterMD
      @AaronBosterMD  6 лет назад

      You don't NEED "positive" spinal fluid to make the diagnosis. Most often in USA we diagnose exactly as you were diagnosed, based on history, physical and MRI findings. Thank you for sharing Teresa and thank you for watching!

  • @heshamadel5819
    @heshamadel5819 Год назад

    Thanks Doctor for this video.I have a question please.I was diagnosed with CIS two months ago with (positive Oligoclonal bands, 2 Lesions in brain and single lesion in spinal cord).i started taking avonex..does it mean that i will take this medication for lifetime or i can stop it after some years if i had no attacks or new lesions?

  • @rivaldo9rivaldo
    @rivaldo9rivaldo 5 лет назад +1

    Hello , just curious can you please share what it means that cis is monophasic? What does it mean by that?

    • @AaronBosterMD
      @AaronBosterMD  5 лет назад

      CIS = clinically isolated syndrome.
      Mono-phasic = one occurrence (which might last weeks to months). Doesn't recur multiple times

  • @brittaroth3780
    @brittaroth3780 6 лет назад

    Dear Dr. Boster, end of next week will be my next MRI to make sure if there is a difference to the last one last year which showed many typical leasions. One week later I have an appointment with my neurologist to talk it over and make decisions for DTM and or steroids to help with my walking issues and balance. Would you recommend steroids for "only" walking issues and balance? steroids don't cure, they only help stop the inflammatory happening in my brain and spinal cord, I know that, but do the steroids help with other things too? I'd love to hear from you. Thank you so much for you videos! I m a frequent listener!
    greetings from sunny Upper Franconia in Germany, sincerely Britta

    • @AaronBosterMD
      @AaronBosterMD  6 лет назад

      Britta, I am unfortunately not able to provide you (or anyone else here) with medical advice. I am very happy you have plans to discuss this with your Neurologist as the decision involves a lot of factors specific to YOU that will have to be sorted. I hope you understand. I am grateful for your "viewership" and hope my video helped "prepare" your thoughts for your upcoming talk with your Neurologist!
      It's sunny this am in central Ohio (midwestern United States) and I'm drinking a cup of coffee and watching the birds as I type to you!

  • @ragub6
    @ragub6 5 лет назад +1

    Thanks for the video Dr
    I had mild double vision, only sometimes and was getting lazy for long walks in 2003, My GP diagnosed diabetes in 2004, and when I had mild tremors (little finger), he sent me to the Neuro, who just tapped here & there, touch nose, tongue out etc - "Go take the MRI", Afterwads, He just said "You have Demyelination", I said "Dee my what", Dr said "Get admitted for IV - Get a 2nd Opinion if you need one".
    I was confused, Diabetes OK, But otherwise I was doing good, Just one MRI? So serious for 2nd opinion?
    I heard the term Multiple Sclerosis only from the nurse in ward for the 1st time - Dr Google for more information thereafter :-)
    Reminded on my diagnosis thats all

    • @AaronBosterMD
      @AaronBosterMD  5 лет назад

      On behalf of doctors, I apologize for the way you were informed of your diagnosis. wow.

    • @ragub6
      @ragub6 5 лет назад +1

      @@AaronBosterMD No Probs Dr, I was so busy with my career then, took 11 more years to "domesticate" me

    • @AaronBosterMD
      @AaronBosterMD  5 лет назад

      #MSWarrior

  • @Kitty-gk1gi
    @Kitty-gk1gi 5 лет назад +1

    If someone were to have a clear brain MRI, transverse myelitis and a positive LP.. which category would that then fall under? CIS or MS?

    • @AaronBosterMD
      @AaronBosterMD  5 лет назад +2

      Not enough information for me to answer. I'd need to take a history, examine the person review the MRI scans of brain and spinal cord, review CSF results and blood lab results.

  • @jen8774
    @jen8774 5 лет назад +1

    How long do these issues last following an episode. For example numbness and tingling in the face and hand? It's been 4 months. 1cm lesion on spinal cord at c2 and incidental foci enhancement on right cerebrum. Also vitamin d deficiency ( didnt know that was important until watching your videos)I was told possible ms possible focal. myelitis Follow up in six months.

    • @AaronBosterMD
      @AaronBosterMD  5 лет назад

      They can last months for sure Jen

    • @jen8774
      @jen8774 5 лет назад +1

      @@AaronBosterMD Thank you for the reply. Another quick question, the facial tingling has spread from just the jaw area to over the cheek in the last day. Is this normal or something 8 should be more concerned about? Thanks again.

  • @toyazylstra6736
    @toyazylstra6736 5 лет назад +1

    I am so confused after a Neuro visit. I developed 1 t2 pons lesion causing double vision and blurry vision. No other lesions. Positive 3.4 Obands. Went into the Neuro prepared to talk ms. The Neuro kept saying I didn't have CIS or MS and instead is testing for nmo. I'm so confused the Neuro wouldn't consider MS or tx for it. Is this normal?

  • @hupfer7047
    @hupfer7047 6 лет назад +1

    So this means eye pain and vision loss for a certain timespan, ataxia and tremor, chronic urine retention and and brain fog with a normal MRI and normal spinal fluid will lead to MS in 20%?
    How would this symptom complex be called otherwise? Is there an actual diagnosis for clinical isolated ms symptomes?
    It’s so weird to have symptoms like that all the time but no reason for it. I don’t want it to be MS either, but a name for it would be awesome.

    • @AaronBosterMD
      @AaronBosterMD  6 лет назад +1

      Neurological symptoms can be caused by many many different things. The list is too long to write out. Lots of investigations needed to sort it all out.

    • @hupfer7047
      @hupfer7047 6 лет назад

      Thanks for the answer.

    • @AaronBosterMD
      @AaronBosterMD  6 лет назад

      no worries! #WeHaveMS

  • @rivaldo9rivaldo
    @rivaldo9rivaldo 5 лет назад +1

    Can cis be diagnosed by hand tingling that lasts a minute or 2 every few days with frequent urination, is that typical?

    • @rivaldo9rivaldo
      @rivaldo9rivaldo 5 лет назад +1

      The hand tingling came about a month or more after the frequent urination. The urination was like 25 times a day. However it settled a bit after some mind training but still i have my days where it's back up there. Does this sound like cis or anxiety? Please help I just need your opinion while I wait many months to see a Neuro. I'm going to see a Neuro regardless but some information regarding my symptoms if they are typical or follow a certain pattern. Amazing channel btw I feel I know quite a bit. I already have a neurological condition MG, so many differences yet so many similarities

    • @AaronBosterMD
      @AaronBosterMD  5 лет назад

      I'd encourage you to discuss this with your provider for sure Rivaldo!

    • @rivaldo9rivaldo
      @rivaldo9rivaldo 5 лет назад

      @@AaronBosterMD thanks for the reply but now I'm worried this means something bad. I did a brain mri and it was clear

    • @rivaldo9rivaldo
      @rivaldo9rivaldo 5 лет назад

      I will see a Neuro but it takes much time many many months