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Thread: Newly diagnosed with questions

  1. #1

    Newly diagnosed with questions

    If you read my original posting, I have edited this since I have more time to write - my baby had woken up yesterday from his nap and was crying....

    I am newly diagnosed with TM and from reading a lot of the information here, I consider myself very lucky and grateful to have minor symptoms. I am very sorry so many have much worse situations than me. I am confused and frustrated as I am sure alot of people are- no apparent reasons for the onset of the symptoms - MRI's of spinal column and brain are clear (maybe slight signal variation at T-3) Lumbar puncture and all blood work came back clear/normal - ruled out MS. The diagnosis from my neurologist is that it is viral. My symptoms are very mild - tingling in legs with some lack of sensation and tingling in two fingers on hands. I am very lucky that I have maintained motor function and strength.

    The symptoms started the end of October with tingling and numbness in my feet that progressed up to my chest that have gotten periodically much better and then recur. Now I just face the tingling in my legs and a lot of fatigue. (Which is very difficult - I am a stay at home mom with a baby and four year old.) My Dr. has only provided me with the feedback that it is viral and needs to run its course with no date for any follow-up. I am allergic to steriods so have not received any medication for symptoms. I am just curious if this is all there is to the treatment? I feel like I was given a diagnosis and then left with nothing- so I have come searching for any TM information I can find.

    Can anyone recommend a doctor with experience in treating TM?- I am in South East PA - just north of Philly.

    Any insight would be greatly appreciated!
    Last edited by dpsinpa; 01-13-2007 at 11:15 AM.

  2. #2

    Smile

    I can share that miy wife began with mild simptoms that lasted for over a year before the situation got out of hand. I regret to this day that I didn't act faster. My experience is that Johns Hopkins has one of the best teams that deal with TM. All of the doctgors there are on the same treatment page in that you don't mess with TM you tdreat it agressively.
    wishing you the best.

  3. #3
    Hi I have TM for 5 years now I went to JOHN HOPKINS. DR. KERR is great.You can also get alot of information by going to the transverse mylitis site at JOHN HOPKINS. If you have any questions just PM me anty
    Be always determined in Life and Love

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    I would get a second opinion for one reason: normally TM does not strat down and go up. I mean it normally starts in the srms oor chest and goes down toward the feet. Not always but often. A clear LP is good news and can indicate a virus that has done its damage and then left. That is how most idiopathic TM presents. That you have little loss of feeling or movement is a good sign if this is TM.

    I agree with the rest here in that a second opinion by someone at the Johns Hopkins TM Center and some reading at the myelitis.org site would be in order.
    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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