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Thread: pulling my hair out

  1. #1

    Question pulling my hair out

    new to the forum.

    basic history:

    After months of slow progressing numbness starting in my left toe, then foot, then knee, then fingers, hands, balance loss

    I had an episode of transverse myalitis about a year ago - spent a week in the hospital on iv steroids, improved quite a bit.

    Have a lesion on my spinal cord in my neck, none on my brain.

    After a few weeks the numbness & stiffness continued to progress, slowly, daily.

    Then last march I had optical neuritis - grey/very blurry spots. Again another round of iv steroids, vision returned fully, though still a bit blurry, no more gray.

    subsequent mri's showed improvement with neck lesion, no brain or optical lesions.

    I moved across country and changed dr's.

    Saw a couple - same diax - i am 'somewhere in the ms - devics spectrum' - closer to devics.

    All tests negative - devics blood test, spinal fliud for ms, cancer, etc.

    I'm being treated as if devics/ms - am started on cellcept but everyday the numbness/stiffness slowly gets worse no matter what.

    Taking baclofen which seems to help w/hypereflexia but no effect w/stiffness. Just keeps getting worse.

    I mentioned to several Dr's that i am certain, however, when i was young over 25 yrs ago i had a chancre sore and was never treated for syphillis.

    I had tests for syphillis - multiple times - rpr and fta-abs - both negative of course.

    Is it still possible to have Syphillis w/these tests all negative?

    I still wonder if i actually have neurosyphillis/tabes dorsalis

    thoughts anyone?

  2. #2
    Your case does sound suspiciously like MS/Devic's variant. The Devic's antibody test can be negative and that doesn't definitively mean you don't have that variant. It's frustrating that this is a hard diagnosis to "prove". CellCept is certainly not routine treatment for your condition, but it is usually pretty well tolerated and I've heard some speciality centers are trying it...... are you seeing a specialist in a Multiple Sclerosis clinic at a reputable academic center/hospital? One new treatment that has been helpful for some people severely debilitated by their Devic's is Rituximab. Something you should talk to your doctor about if your course seems progressive or if you have frequent flares. A serious med.

    Certainly your doctors should have looked for all of the "mimics" and systemic diseases that can give you episodes of transverse myelitis or optic neuritis. These include rheumatologic disease like lupus and rheumatoid arthritis, sjogren's etc.. and checking a B12 and you are right - syphilis serologies. While the syphilis tests are not always very specific, if you have been tested multiple times it is likely you don't have it. Syphilis (like B12 deficiency) is one of the great mimics.... it can present as a lot of different things, but honestly - it would still be surprising for it to look like your story.

    Here's a nice review of neurosyphilis for you

    I hope your symptoms improve soon.

  3. #3
    I'm seeing a neurologist at University of Chicago.

    I've had multiple tests for rpr, fta-abs always returning negative. Irks me though i am certain i had a chancre sore 20+ yrs ago never treated.

    Everything has always been slow steady progression of numbness - no strength loss ever, just slow, steady numbess and stiffness.

    yeah i was offered the Rituximab treatment, but passed for now since there is the risk of pml and heck though i'm uncomfortable as hell i can walk and do everything still - just with massive numbess and stiffness.

    i start physical therpay next week i'm hopeful that will help with things.

    my bacolfen is up to 80mg/day now - i do notice it helps from time to time though it is random with what - sometime feet, calf, thighs, back - but at least it helps somewhat.

  4. #4
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    Kangaroo....anyone test you for retinal/optical herpes? Can you PM your neurologist's name? I'm finishing a class Monday and I'll dig through my huge RNI Symposium book on Devics for you.
    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.

  5. #5
    I'm sorry this is so frustrating for you.

    PT is a great idea.

    I understand your reservations about Rituximab. The risks are real, although pml is very rare. But it is a medicine to keep in mind and think about more seriously if your function really declines, as it has led to some incredible recoveries. I saw a young woman who was a quadraplegic and blind after 2 years of multiple severe flares of optic neuritis and transverse myelitis, and after treatment over the next year with rituximab, she was walking again/using her arms with ease. Unfortunately, she never regained her eyesight.

    Remember, not all chancre sores are caused by syphillis.

    However, if you really feel that your mind is not satisfied, why not look for one of the best physicians in Chicago for Infectious disease and review with them your history/symptoms/testing and discuss what are the possibilities that syphilis is a contributor despite your negative testing? I am assuming that you have had a lumbar puncture that was negative for syphilis testing as well. You must know that syphilis is actually pretty straightforward to treat, so if there was a chance you had it, I would hope your doctors would jump at a chance to treat it and cure you.

    It's terrible to have a nagging question/concern that you feel hasn't been properly addressed.

  6. #6
    3 weeks ago i my vision went in my left eye and 2 weeks later my legs went stiff and slowly the rest of my body up to my abdomin. doctors thought ms, went for mri and no damage to the brain so have been diagnosed with devics disease although i am told there is no real way of proving it. i came home yesterday and still reeling from the shock of things to come. i can hobble barely but stiffen as i do. no one seems to know much about this disease and its just a matter of trail and error on what will work. i am on steroids and pain killers at the moment

  7. #7
    Senior Member Mona~on~wheels's Avatar
    Join Date
    Oct 2007
    Cleburne, Texas, USA
    Welcome to CC Kangaroo & tlc.

    I'm sorry you're having so much pain & you can't get answers.
    Good luck with y'all's condition.
    Just wanted to wish you well.

  8. #8
    some key issues that make Devic's and MS a little different. Of course, the lack of brain lesions, although there have been some with a few brain lesions and positive for Devic's. My husband is one of them. 5 lesions that disappeared in 1 year. Devic's also can attack both eyes at the same time or an a transverse myelitis along with optic neuritis attack. Not typical of MS. MS and Devic's are real similar in how they affect you. For all the medical community that doesn't know what Devic's is...........we call it MS's evil twin. Very similar but much more brutal in the attacks.
    On baclofen, it never really has helped Gary, nor has zanaflex. Valium helps, but he doesn't take it all the time because it is addictive.
    Last edited by Amelia; 03-07-2009 at 11:54 PM. Reason: needed to add something

  9. #9
    Since 2003, when the NMO IgG autoimmune antibody was discovered, Neuromyelitis Optica has been considered it's own disease entity. As for brain lesions, it is now known that up to sixty per cent of patients will eventually present with brain lesions though *not in a pattern consistent with MS*.

    A positive result on the NMO IgG is a definite for the disease, but a negative has roughly a 30% chance of being a false negative. (Some estimates put this percentage much higher.)

    It is not MS, and cannot be treated thusly. Because of NMO's propensity to cause catastrophic disability, and even death from an acute attack, ongoing treatment is imperative for the relapsing patient. (And roughly 80% of us are indeed, relapsing.) As for Rituximab, yes, there is a risk of developing PML, but that risk is a very small one. Keep in mind that there have been deaths caused by any number of seemingly innocuous over the counter drugs that we all have in our medicine cabinets.

    Grace (NMO+ since 2005, maintenance drug Rituxan.)
    Last edited by Grace53a; 03-08-2009 at 10:53 AM.

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