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Thread: TM anyone?

  1. #11
    THanks
    Now all that's left of me is what I pretend to be....

  2. #12
    I also have TM and am almost 11 years post. I got the virus through a Lupus flare at the time. I started out as no movement below my neck, but after I came out of coma my arms started to come back SLOWLY. I'm diagnosed between a T2 to a T4. I have full function of my arms, fingers, etc. I have no pain thankfully with it, but nothing has returned from my injury level on down. My spasms are controlled with 50 mg of baclofen twice a day and I ride bike at least 4 to 5 times a week to keep my legs flexible. In talks with my neuro and rheumotologist to hopefully try me on 4-AP and see if anything returns.
    "Dream as if you'll live forever, live as if you'll die today." ~ James Dean
    http://www.kristi-allen.com

  3. #13
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    I was diagnosed with TM October of 2004. My lesion was from T-4 - T-9. My right leg was completely paralyzed and my left leg had no feeling. I was in the University of Pennsylvania Hospital for 2 weeks and went home to live with my parents. I had rehab in the home for 3 weeks then outpatient rehab for 3 months. I can walk, run, drive a car, and feel almost normal. I have a lingering tingling in both feet, and sometimes feel a little uncoordinated, but feel normal otherwise. I had a little relapse June of 2005, and have been on steroids since. I finally just got diagnosed with Sjogren's Syndrome and Devic's Disease, either could have caused the TM. I am one of the lucky ones, I am able to work full time and continue doing everything I did before I had TM.
    Christine

  4. #14

    Unhappy

    Ur not the only one, i have had TM for 2 years now (new comer). I got it when i was 14
    Last edited by HttWheel; 03-26-2006 at 09:42 PM.

  5. #15
    My son was diagnosed with TM on 11/18/2005. He is a T-10 complete. He is paralyzed from the waist down. We have been at KKI until last week. He has been doing restorative therapy. We are hoping with a combination of his efforts, Dr. McDonald and Dr. Kerr that Ben will recover. He is 9 years old. We are lucky to have the FES bike and EasyStand 6000 in our home. We do have 4AP, but we haven't tried it yet.

    How long was it before muscles started to return?? Pam

  6. #16
    Super Moderator Sue Pendleton's Avatar
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    Pna,

    My inury was from a spinal stroke at C4 and incomplete ASIA B (feeling but no movement). I did recover breathing on my own at 7 or 8 days but my right arm (my stronger side) began within another 3 weeks or so. Then not much at all until 18 months or so and continued for 8 years. It was slow but steady. I'm a C-5-7 with weight bearing ability and when not sick (hate being sick) can sit up using stomach muscles. Still have quad gut though. I'd encourage Ben to use the FES and Glider as much as possible and swim when summer comes. Check him out in a therapy pool first and learn some exercises he can do in water and hey, it just plain feels good to have the weight off your butt and act like a kid.

    Do not take 4-AP that is compounded if it has been sitting around. It loses it strength rapidly and you can't tell what dose he'd be getting. If the pharmacy you get it from is nearby I'd ask for 15 days at a time and speak with the pharmacist about how often he refills his supplies. I took it for several years and it helped both muscles and sensation a lot. The only reason I stopped was acid reflux. It runs in my family and the compounded formula did a number on me. I had no problems when I was in the Fampridine trial. Obviously follow Drs McDonald and Kerr's advice on dosing and ramping up to a steady dose. Spring break may be a good time to start to see if it bothers his falling asleep. That seems to be the biggest complaint I've heard about it.
    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
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by VETTECH33
    I was diagnosed with TM October of 2004. My lesion was from T-4 - T-9. My right leg was completely paralyzed and my left leg had no feeling. I was in the University of Pennsylvania Hospital for 2 weeks and went home to live with my parents. I had rehab in the home for 3 weeks then outpatient rehab for 3 months. I can walk, run, drive a car, and feel almost normal. I have a lingering tingling in both feet, and sometimes feel a little uncoordinated, but feel normal otherwise. I had a little relapse June of 2005, and have been on steroids since. I finally just got diagnosed with Sjogren's Syndrome and Devic's Disease, either could have caused the TM. I am one of the lucky ones, I am able to work full time and continue doing everything I did before I had TM.
    Christine
    Christine can you explain a little about what Devics and Sjogren's Syndrome are like? Devics will be covered during the symposium in Baltimore. Please check the first posting. I'd love to meet everyone who can make it. And yes, you are one of the lucky ones. Most who recover so well from TM tend to be left with a lot of nerve pain.
    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.

  8. #18
    I too am looking forward to symposium. Devic's was thought (some still do) to be a severe form of MS. It normally only effects the spinal cord and optic nerve. When my partner was diagnosed in March of 05, there were only 200 known case's in the US. Now there are more than 500 thanks to a new test done through the Mayo Clinic. Devic's is misdiagnosed as MS in as many as 30% of the cases. I took him to the hospital with headache,neck ache and flu like symptoms. He was originally diagnosed as having meningitis and admitted. After 5 days he became blind, 3 days later he was paralyzed from neck down. He was discharged after 29 days to nursing home and we were given very little hope. He now can read (with magnifier) walk pretty well but sometimes has to use cane.
    I started Devic's online support group
    http://groups.google.com/group/Devics-support
    We have over 60 members from several countries.

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