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Thread: TM, MS, RSD, and Encephalitis...anyone else?

  1. #1

    TM, MS, RSD, and Encephalitis...anyone else?

    Hi,

    I joined this form almost a year and a half ago when I was first diagnosed with TM. Since then, my life has turned into that of a professional sick person, and I've developed autoimmune encephalitis (which is improving), MS, and, most recently, RSD (which probably started in July and was mistaken for a TM flair up - 2 back to back).

    I have several other more minor autoimmune disorders and conditions, and my doc believes there is still a systemic autoimmune disorder to be held accountable.

    I'm lucky to have one of the top docs in many of these and to not have had full loss of mobility, altho I do have physical and cognitive impairment and seem to spend more time in the hospital as either an in-patient or out-patient than I do living a "normal" life.

    Sometimes I'm at peace with that, sometimes not.

    I'm wondering if there's anyone else here that has the same or similar group of neuro disorders, and how their docs are handling it.

    Thanks,
    Melanie

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    Your TM/MS doc/s can tell the difference between the two after your MS diagnosis? I'd always understood that when someone with TM develops MS the TM is no longer the diagnosis.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  3. #3
    No they can't, the TM is now considered a symptom of the MS. But both are distinguishable from RSD. Some of the treatments overlap among the three, but for now I'm on copaxone, receive IVIg, plasmapharesis, and for my recent full-body RSD flare-up ketamine infusions, plus all the other neuro drugs.

  4. #4
    My husband Don was diagnosed in May 2001 with TM. The doctors determined it was probably caused by the virus he had a couple of weeks earlier, he never gained anything back and is a T4-5 para. About one year later, he had a another bout, the numbness moved up into his neck, but moved back down to the T-4 level and he had never had another episode since. He has been checked twice for MS but never had any of the other symptoms MS presents. He had just been to the doctor last Thursday and had routine blood work done. Last Saturday, I noticed a red rash on his shoulder where his seat belt rubbed, Sunday he had nose bleeds and his tongue was sore and bleeding. Monday he had a red pin point rash on his foot and brusing, I suspected his coumadin level was too high, he went back to the doctor on Tuesday. They called Tuesday night and told him to go to the hospital. Apparently his blood platelet level was down to 2 and he was at risk of serious bleeding. They gave him platelet infusions, his count would go up overnight, only to drop the next day. They did a bone marrow biopsy, but have now determined it is ITP (idiopathic thrombocytopenic purpura, an auto-immune disorder. They treated with an IVIG infusion and steriods, after which his platelet levels rose first to 68 then to 96. We will get the final result from the bone marrow biopsy Monday, but the doctors have said the preliminary results didn't indicate leukemia or other blood cancers. So long story short, it appears that once again, an auto-immune disorder of another type has developed. Dr's will try to taper Don off steriods shortly and see if the ITP returns, at which time ? (maybe steriod maintenance or spleenectomy). Melanie, sorry you are running into more problems yourself. I definately think there is a connection between disorders.

  5. #5
    Quote Originally Posted by Sue Pendleton View Post
    Your TM/MS doc/s can tell the difference between the two after your MS diagnosis? I'd always understood that when someone with TM develops MS the TM is no longer the diagnosis.
    That's exactly how I went. TM for 9 years... then it exploded into MS... And continued to explode into my now wheelchair-bound form. No bueno... But that's how it goes.

    The doctors kept telling me while in 'TM' that I was like 99.9% NOT an MS candidate. Just proves to me they don't know jack squat.

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