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Demyelination disorder

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    Demyelination disorder

    Right now, that is my diagnosis...demyelination disorder. I can live with that, symptoms arenít horrible and Iím thankful for the most part for that. My biggest concern is to know whatís going on so it can be treated and hopefully not worsen.

    It started about 17 years ago when I went to my eye doctor because of a blurry spot in my vision, only to find out that I had optic neuritis. He referred me to a neurologist after telling me itís often the first warning sign of MS. Luckily my neurologist was great and saw a lesion on my brain MRI but wasnít worried about this staying many people can be born with this.

    Now at 40 years old, this started again last fall. I went to my doctor because I had no cold sensation in my left hand and numbness in my arm. It eventually traveled to my left leg. Brain MRI was fine but I did have inflammation in my cervical spinal cord. Again, MS was brought up but by the time I saw the neurologist symptoms improved and we agreed to monitor for anything new. Since then Iíve had burning in my right leg, with only one incident of it actually feeling like my leg was on fire. Iíve had two pretty significant episodes of extreme muscle spasms in my rib cage last about 20 minutes. I had a follow up MRI when I was having the leg burning, nothing new other than my cervical lesion improving.

    I decided to get a second opinion of the review of my symptoms from the neurologist who I saw for the ON. Iíll have a MRI of my thoracic spine next week and a LP. He said right now I have demyelination disorder. Despite requirements being met for a diagnosis of MS the two could very well not be connected due to the length of time between the two episodes.

    Im okay with all of this, the biggest concern I had is I donít want to ignore whatís happening and inadvertently have it get worse.

    Hoping for the best, but I donít entirely know what that would be at this point.

    Welcome to MSWorld sath!

    Your Dr probably referred it as a catch-all phrase (demyelinating disorder) before further testing can be done to get an accurate diagnose. MS is the most common of these disorders.

    I hope something will reveal itself with the thoracic MRI and the LP. Getting on a DMT (drug modiflying treatment) as soon as the dx is made is very important. I have heard here on the boards that some people with CIS (Clinically isolated syndrome) are advised to go on a treatment. Of course, this should be discussed with your neuro.

    I wish you well and keep us informed with the outcome!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator


      Hi sath ~


      Thank you for sharing your story with us. Looks like you have been in 'limbo', sort of, for quite some time.

      Good luck with your MRI and LP next week.

      Please let us know what you find out. We'll be here.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~