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Thread: Is fatigue considered a relapse: Transverse Myelitis

  1. #11
    Senior Member lynnifer's Avatar
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    It is unfortunate that Transverse Myelitis remains a mystery.

    If it were me, I'd try to hold on to what I had with everything (doctors, PT) ... but you have to live your life every day, not me. Good luck.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  2. #12
    How utterly frustrating for you.

    I still feel bad that you can't get more answers - and still hope you don't give up trying to find them.

    I hope you have one neurologist who has known you from the beginning. Please keep in touch with someone. Even if it's just a phone call to the doctor who took care of you at Hopkins....

    While science/discoveries never seem to move fast enough (as everyone on this site knows...), new information/interpretations/tests/treatments are coming along all the time. You never know....

  3. #13
    Dear Football123,

    I'm newly diagnosed with TM, so I don't have a lot of advice. But I do wish you the best life possible. Maybe my story can help in some way:

    I started having autoimmune related diseases about 4 years ago when I was 29, but I didn't have health insurance, and I ignored it and went on with life as usual. Since I got my first diagnoses (chronic kidney disease...most likely caused by autoimmune; and perniosis) 2 years ago, I have been diagnosed with several other conditions, including vasculitis, psoriasis, and psoriatic arthritis. I still don't have a complete diagnosis, but I have doctors I trust working on my case, so I'm leaving it to them, dealing with the TM from moment to moment, and trying to stay positive...which is a major challenge. Today, I can barely walk; it's more like a stuttering shuffle and I go back to the hospital Tuesday for 2 weeks of treatment.

    Also, I "fired" my first doctor because, a) I didn't trust him and b) I didn't like him. I have a wonderful PCP who has directed me to the best possible physicians for my care--ones that are at the top of their game and have a bedside manner that works with my personality.

    I hope that some day you will have the opportunity to have the right doctors on your side.

    Best,
    Melanie

  4. #14
    i got TM also. it happened last november and i have almost all movement back except my ancels and toes. i walk w/ a walker at home and friends houses but i use a wheelchair at my high school.
    im 14 and this happened to me when i was 13.
    im doing very good my doc said and they expect to have a full recoverie
    idk how to spell that, ahah!

  5. #15
    and also i wanna be a physical therapist when i grow up, i wanna help people like so many people are helping me. im taking biology and bio/med and im a freshman. they're soo hard but its gonna be worth it when i help someone walk again, like MANY people are w/ me

  6. #16
    Super Moderator Sue Pendleton's Avatar
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    Football, there appears to now be a relapsing [recurring] form of TM, MS of the spinal cord only, etc. I'd suggest writing up what has been happening and email Dr Douglas Kerr at dkerr@jhmi.edu to see if he or his group have any ideas. I'd skip a spinal tap too unless it could really help me. They hurt like ............! Have you ever had your blood cleaned by plasmaphresis? Sometimes when the steroids don't work this filtering can help.
    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.

  7. #17

    Red face transverse Myelitis

    I have a confirmed case of transverse myelitis. It started Oct.12th while on an airplane (to Vegas), that's some luck huh? My feet were the first to go numb. Within 24 hours I was numb up to my waist. I spent a week in my local hospital which turned up nothing. I immediately went to Mayo Clinic.I checked into the mergency room and was put on a stand by basis.Within one week they were able to give me my diagnosis.They were wonderful up there. I would suggest anyone to go there if they are experiencing any medical problem and not getting sufficient answeres. I would appreciate contact from other concerning this medical condition.

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