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Thread: Tranverse Myelitis

  1. #1

    Tranverse Myelitis

    Hello I am a new member. My brother was recently diagnosed with idiopathic tm in the t9 region incomple. I was looking for excellant qualified doctors and rehab near the Long Island NYC area. I will be willing to drive him as far as it takes so he can get the best care and hopefully make a full recovery. Has any one made a full recovery from tm? Has anyone been to John Hopkins, I have researched that they are the best in the world and most knowledgeable. Like I said I am just starting and am looking for as much guidance, direction, help and support that I can find. Thank You Bryan

  2. #2
    Senior Member
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    sorry-

    I don't remember this guy's name, but when I had TM, there was a pretty good therapist/neuro in Roslyn, LI. Though he may be a deadhead, he is still accomplished and competent!
    Last edited by SCI-Nurse; 03-11-2009 at 09:34 AM.

  3. #3
    For rehabilitation services, I would recommend either Mt. Sinai SCI center in NYC or Kessler in East Orange, New Jersey.

    While exercise and therapy is important, keep in mind that this will not necessarily correlate with return. Getting return is luck of the draw, and a person who does not get return should not be thought to have not worked hard enough, or wanted it hard enough. Therapy will maximize what he has, and what does return (if anything).

    You are right that Johns Hopkins is the leading research center for TM, and a visit there for a medical evaluation would also be a good idea.

    (KLD)

  4. #4
    sent you a PM

  5. #5
    Super Moderator Sue Pendleton's Avatar
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    Since the normal waiting time for an outpatient appointment to Hopkins is 6 months start now. And did your brother receive steroids at the time he was diagnosed? If the attack was fairly recent you and your brother might want to discuss plasmapherisis with his neurologist. This can sometimes add to the recovery steriods don't cover. But a good rehab is very important and there are some very good ones as noted above that are closer to 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.

  6. #6
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    if you don't recover fully, you didn't work hard enough, and you should be blamed for your failures!

  7. #7

    tm

    Quote Originally Posted by cdurfee99 View Post
    if you don't recover fully, you didn't work hard enough, and you should be blamed for your failures!

    ...are you serious? did you fully recover from your tm?

  8. #8
    thank you Sue. As you can imagine me and the family are overwhelmed! Kevin my brother did do his acute rehab at Mt. Sinai under the guidance of Dr. Bryce and will do his follow up with him but doesnt meet with him until March 26th. What should we be doing in the mean time? Is it too late to consider plasmapheris?

  9. #9
    Bryan,
    Sent PMs.
    Nancy

  10. #10
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by cdurfee99 View Post
    if you don't recover fully, you didn't work hard enough, and you should be blamed for your failures!
    Change in the meds? Or do you want to PM the problem?
    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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