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Thread: TM or not

  1. #1

    Question TM or not

    I started going numb about 7 months ago, and have all kinds of test ran. I can't tell you how many test ran, but all come back normal, they can not explain why I am numb. My local neruo sent me to UAB and the lady there just wrote me off as being because of my gastric bypass 3 years ago. Said that I had a vitiam deffincy, but I don't understand when all my levels are normal. that and she gave me a cream that is suppose to help the numbness. Which I don't feel my arms and from waist down now. I was diagnosed as TM possiably MS, but no one actually knows.

    I know that it is getting old and tiresome of just going to doctors and getting different answers everytime. I have to avoid stress and heat. And a lot of walking all effect me very much, I have pretty bad reactions when I encounter those. I loose all my balance and can't think straight

    I don't really know where to turn to now, no one can actually explain what is wrong with me. Since all my MRI's show normal and all my blood work and LP and everything else they have performed on me come back within normal range. I have also in the past couple of weeks started have seziures, which they think was the medication I was on. That has slacked off since I came off the neurotin. But I had another one when I got really stressed out.

    Any help would be appreciated.

    Joey

  2. #2
    joey, the symptoms that you describe are not those of transverse myelitis. Wise.


    Quote Originally Posted by joeyhoss
    I started going numb about 7 months ago, and have all kinds of test ran. I can't tell you how many test ran, but all come back normal, they can not explain why I am numb. My local neruo sent me to UAB and the lady there just wrote me off as being because of my gastric bypass 3 years ago. Said that I had a vitiam deffincy, but I don't understand when all my levels are normal. that and she gave me a cream that is suppose to help the numbness. Which I don't feel my arms and from waist down now. I was diagnosed as TM possiably MS, but no one actually knows.

    I know that it is getting old and tiresome of just going to doctors and getting different answers everytime. I have to avoid stress and heat. And a lot of walking all effect me very much, I have pretty bad reactions when I encounter those. I loose all my balance and can't think straight

    I don't really know where to turn to now, no one can actually explain what is wrong with me. Since all my MRI's show normal and all my blood work and LP and everything else they have performed on me come back within normal range. I have also in the past couple of weeks started have seziures, which they think was the medication I was on. That has slacked off since I came off the neurotin. But I had another one when I got really stressed out.

    Any help would be appreciated.

    Joey

  3. #3
    Any idea's on what I might can bring up to my docotors to look for? It isn't something that I am making up, there has to be something going on somewhere.

  4. #4
    Senior Member
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    Thumbs down joey

    sometimes no answer is better than getting one.
    Feel lucky you don't have a spinal avm. These are fatal over time, slowly progressing until patient is bedridden for good. There is surgery, but these avm's cannot be untangled, over time they become a part of the blood network, and the prospects are grim and irreviersible, ultimately leading to a slow, agonizing death.
    sherman brayton

  5. #5
    Well I think that I would rather know that than nothing, or worse all of them changing their minds acting like it is in my mind. All I want is an answer, or at least a doctor that is willing to search for an answer, not just say because I had something in the past that is it. Even though all my levels check out normal. That is just a doctor that doesn't want to do their job. And I am really getting tired of them. I didn't like doctors before this happend and I don't like them even more now. And I even have a few friends that are surgeons, but they are friends and not doctors to me.

    So for me to know what I had, even if I was dying, at least I could make the most of the life I had left and go from there. I dont' know what I have, or have tomorrow left. So to me, you have a privilage to know what you have. You can come to terms with it and lead your life accordinly. Mine, I dont' know one day from the next as to what they say I might have.

  6. #6
    joey, doctors don't always have an answer. I can't tell from your description what is going on. Sorry. All that I know is that this is not the way transverse myelitis manifests. Wise.

  7. #7
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by Wise Young
    joey, doctors don't always have an answer. I can't tell from your description what is going on. Sorry. All that I know is that this is not the way transverse myelitis manifests. Wise.
    Hi Joey,

    Did your MRIs include your brain? Ms will normally show up as plague specks in the brain. There us something now called spinal MS where a person has what is basically multiple episodes of TM that then leave the person with what is a cousin of MS without involvement of brain and eye function.

    It is possible for your doctor at UAB to do a long distance consultation with the doctors at Johns Hopkins Transverse Myelopathy Cemter and they cover almost everything that is not traumatic. If your diaagnoses is one of the infectious or deficiency diseases they also can refer you to an appropriate center for treatment or information.

    I totally agree with Wise. This does not sound like basic acute TM. And do make sure a brain scan is done to rule out other possible causes of your seizures.

    Best of luck to you.

    www.med.jhu.edu/jhtmc/
    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.

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