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Thread: TM: when should physical therapy begin?

  1. #1

    TM: when should physical therapy begin?

    Hi,

    I'm newly diagnosed with TM. Since my diagnosis and first hospitalization (tests and IV solumedrol), I have declined (I'm out of hospital 2 weeks and still on prednisone, down to 60mg). I "walk" with a cane and have virtually no strength in my right side and overall weakness, among all the other symptoms.

    My doctor has not suggested PT. Is it too early or should I ask him to be more proactive? When does PT typically start in TM recovery?

    Any medical or personal advice would be much appreciate!

    Thanks,
    Melanie

  2. #2
    It should have started the first day. Did you ask to be referred to a inpatient rehab program? Is there a good one in your area with SCI experience that has an outpatient program? You should have been referral already. As you will find out, you need to be your own best advocate. Don't wait for your doctor to do this, thinking they have your best interests in mind. It rarely works that way.

    (KLD)

  3. #3

    rehab response

    Thanks for your quick response.

    When I was in the hospital, an OT taught me how to use my cane and gave me some basic exercises to do, like flexing my foot and lifting my arm and raising my leg, but my doctor told me to rest and not do any exercises until I finish the prednisone taper.

    I'm going back in Tuesday for 2 weeks of plasma pharesis and IV Ig, so I'll be proactive and request inpatient rehab while I'm there. What do you recommend doing if he disagrees with this and thinks I should just be resting?

    I live in center city Philadelphia and my doctors are part of Drexel Uni/Hahnamann Hospital. From what I understand the neuro dept is very good, so I bet they have something for me.

    I'm also going to submit my records to Johns Hopkins and/or get a 2nd opinion from a doctor at Univ of Penn Hospital, but not until I get out of the hospital.

    Thanks again,
    Melanie

  4. #4
    Therapy should be started right away within prescribed limitations by your physician. Frankly, most neurologist know little or nothing about rehab as it is not much included in their training. This is the specialty of the physiatrist, which is the kind of doctor you should be seeing now, and who should be supervising your therapy program.

    (KLD)

  5. #5
    Super Moderator Sue Pendleton's Avatar
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    Let your neurologist know you'll be joining the Transverse Myelitis Association as soon as the paper work arrives. It's free but all the questions on the file you'll get help narrow down what things could cause TM. Contact the TMA through www.myelitis.org. I'm happy to hear your neurologist knows to follow up with the plasmapheresis since your weakness persists after the steroids.

    The Nurse is right in that the sooner PT begins the better. Inpatient at first is best and Philli has a couple good rehabs. Do ask about getting a flu shot if you haven't had one and are still on prednisone. And pool therapy for a weak leg is excellent therapy.

    You say you are going downhill? Do you see a doctor as soon as you felt weak or had paralysis? If so you may have caught the TM before it hit full force. That's a good thing.

    To get the information on sending your records to Johns Hopkins TM Center call 410-502-7099.
    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

    KLD and Sue...response and thank you

    Thank you thank you.

    I did join TMA immediately, as did my brother and mother, and got my packet. Just one article was more informative than my doctor.

    I have occasional partial paralysis and severely affected gait, but I'm grateful that I never became paralyzed. Considering my decline, is this still a possibility?

    I do feel for the most part, that my doctor has been super responsive. He hasn't seen me since I left the hospital, but we've been in touch weekly via phone, and he made the decision to send me back based on our conversations. The first week out, he increased and slowed the steroid taper because of my lack of response.

    My symptoms started about 6 weeks ago, but I think it's been brewing longer:
    1. vertigo and knee buckling; went to emergency room; no conclusion; subsided after about 1 week
    2. 2 weeks after vertigo: incontinence, then legs so stiff and painful to touch i could barely walk; neck pain.
    3. then weakness in right side of body, right leg dragging
    4. i've been complaining about tingling and burning for over a year

    After seeing my specialists (rheumatologist, nephrologist, urologist) the week after I became incontinent, who all thought it was MS, I was able to get in to see a neurologist in less than 1 week. He diagnosed me there with TM and arranged for me to go to the hospital on Monday for more tests and the IV solumedrol.

    So far the MRIs and spinal tap have been negative. I had elevated ANAs.

    in the weeks i've been out of hospital:
    5. weakness greatly increased; can't do stairs; gait is very awkward
    6. tremors; lack of mind/body coordination
    7. blurry vision, increased memory lapses; speech problems
    8. pain and burning increased; but increased neurotin has helped
    9. feeling the band for the first time
    10. urinary frequency; can't void; some incontinence

    But I might have an hour where I feel improvement and then it returns. On Tuesday, I had a great day. Could almost walk without a cane. Then it was downhill again.

    RE: the flu shot. My doctor told me no vaccinations for 1 year and that I should avoid people with flu, colds, chicken pox, measles.

    When I go into the hospital this Tuesday, I'm going to request to start PT right away, no matter what, and I'll also have them send my files to John Hopkins. I'll be there for about 2 weeks, so I hope that will be a good start. I was a professional dancer and personal trainer, so maybe I'll even be able to do a lot of the therapy on my own.

    My rheumatologist is going to be working with my neurologist on diagnosing the specific autoimmune disease causing the TM. They're thinking Lupus or MS. I also have 2 cousins with MS. Over the past two years, I've been diagnosed with chronic kidney disease, vasculitis, psoriasis and psoriatic arthritis. I've also had recurring UTIs and shingles. They've also indicated that I'll need ongoing plasma pharesis, something like every 3 months.

    Again, thank you for sharing your wisdom with me. Your help in my recovery means a great deal. Not knowing what will or should happen is the scariest part.

    Best,
    Melanie

    PS Sue, My mother called Johns Hopkins on my behalf last week and I believe she spoke with you. She really appreciated speaking with you.

  7. #7
    Senior Member
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    I have TM. It was a rapid onset. I woke with back pain and 4 hours later I was paralyzed from my chest down. Aug made two years for me and I'm still in a wheel chair. I have no movement and hardly any improvement. I was lacking PT and was never gave plasma pharesis. PT is such a big part of recovery I'm having a hard time now in PT because I waited to long to get started. My advise to you is research everything and know what your choices are. And don't be afraid to question your doctor. Just because their doctors don't mean they know everything. I haven't found one yet that knows as much as I do about TM. Good Luck
    It is not how we fall that defines us..
    It is how we rise.

  8. #8
    Thanks to everyone for your advise.

    My doc has prescribed:

    speech therapy - for my speech and cognitive problems
    occupational therapy - for the obvious reasons
    pt - walking as tolerated; standing for 1-2 hours/day; and aqua therapy 2x per week

    he said in 3 months as swelling in my spine decreases then we'll progress to more aggressive pt.

    Shana,
    I am sorry to hear that you are still in a wheel chair. I met a woman with 8 years out of TM onset who said she is still experiencing improvements, so don't give up. The docs/statistics are not always right. We all have more chances.

    Good luck to all of you too!

  9. #9
    Hullo Shana and Melanie

    I confess that i do not know much about TM but I do know about MS. My baby sister was diagnosed three years back, but we had known for a while even before that that something was wrong with her. Her motor skills and coordination had been deteriorating for years only we had never paid it much attention. It has come to such a pass now that she can barely walk without a cane and she has so much pride that she would rather fall and hurt herself frequently than walk with a cane. Only last month she fell and hit her head on the corner of a table. The resulting gash millimeters above her eye was painful to even look at. I am also aware that in a few years that she will be wheelchair bound and then bed ridden but the knowledge never prepares you for the deterioration of a loved one. There have been many times in my life that I have been cruel to her in ways that only a sibling can and I am sorry for all those times.

    To delay the onset of muscle atrophy she goes to the gym five days a week and is usually so tired and full of pain afterwords that she has to have a massage to alleviate the pain. The trooper that she is, she just grins and bears it. If it is so painful for a brother to watch I can only admire the courage of those who suffer through it and carry themselves through it all so gracefully.

  10. #10
    Quote Originally Posted by allen@liveadmins.com View Post
    I am also aware that in a few years that she will be wheelchair bound and then bed ridden but the knowledge never prepares you for the deterioration of a loved one.
    This is not necessarily the case. Only 50% of people with MS are only wheelchair mobile within 15 years of diagnosis. Wheelchair bound is a cruel term. My mother has had MS since 1980. She is now power wheelchair mobile only, but that allows her to get around the house and in the community by herself without assistance for mobility. She spends less time in bed than most people, and there is little or no reason that anyone with MS should be bed ridden.

    Quote Originally Posted by allen@liveadmins.com View Post
    To delay the onset of muscle atrophy she goes to the gym five days a week and is usually so tired and full of pain afterwords that she has to have a massage to alleviate the pain.
    This is ill-advised for anyone with MS. People with MS should do MILD aerobic exercise...yoga, tai chi, swimming, etc. and NEVER exercise to exhaustion. They should exercise a short period, then rest 2X that amount of time before exercising more. She may actually be doing herself harm with this regimen. She should consult with her MS physician (physiatrist or neurologist) and see a good PT who can give her a regimen of exercise that will not harm her, but maintain her endurance and strength as long as possible.

    If she is not already in touch with the National MS Society and the activities sponsored by the local chapter (including education, support and exercise), I would strongly urge her to do so.

    (KLD)

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