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Thread: Let's Talk About TM

  1. #41
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    Hello KyLady, I have heard of ADEM i thought it was a form of TM. I was also told ADEM Tm MS are all in the same family , and most of people with TM go on to have MS. i was tested but i do not.

  2. #42
    Super Moderator Sue Pendleton's Avatar
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    KYLady and others, if you have been diagnosed as having TM, MS, ADEM, Optic Neuritis or another AUTOIMMUNE disease you should register with the TMA. http://www.myelitis.org/ They continue studies and trials to figure out what causes these diseases and conditions. And TM does not always lead to MS not even 50% go on to MS.
    Spinal infarcts or strokes are not related to cerebral vascular accidents or CVAs that we consider to be brain strokes. Spinal strokes hit below the brain and occasionally at the brain stem. They effect both sides of the body while CVAs effect half of the body--the opposite side from where the stroke hit in the brain. IOWs, a stroke in the left hemisphere of the brain will effect the right side of the body. When I talk about my stronger side it's a bit more complicated. Blood quit flowing into my spine from a tiny artery on the right side that eventually leads around and provides oxygen to my entire spinal cord at that level. So since my right side at C6 lost oxygen first it seems to be slightly weaker than my left side because it still had oxygen from the blood that had been there just a few seconds before. So my right arm has 2 heads of the tricep working but not that important third head that allows you to extend the arm back up above your head once bent at the elbow behind the head. My left side has a full tricep. Below that level I am patchy at other muscles working and hot and cold sensory. At the very beginning the big difference between a brain stroke and a spinal stroke is pain. Spinal strokes cause exteme short term pain at the point of injury while brain strokes do not cause pain until well after they hit and most of theirs are shoulder connected pain in the effected side.
    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.

  3. #43
    Super Moderator Sue Pendleton's Avatar
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    http://www.myelitis.org/studies.htm

    If you wish to add cells to the Accelerated Cure Project go here.
    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.

  4. #44
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    Thankyou Sue, i am going to contact that site to see what i can do. I would luv to do something to help find the causes to help others. i am 3 years haveing TM so not sure what help i can be.

  5. #45
    I am a T-10 paraplegic diagnosed with Transverse Myelitis in September of 1994. I have zero sensation and mobility below the belly button. I have had many of the complications that come with paraplegia, UTIs and pressure wounds being the most common for me. I still have fairly good upper body strength though the shoulders are a little worn out! I also have autoimmune disease, to be specific psoriasis, a royal pain in the ass but I have been on a medication called Stellara that works like a dream.

    I am lucky in many respects, I have a great family my wife and I had our three children (not kids any more the youngest is 21.... Holy crap I'm old) before the TM. I also work as an accountant for a company that always had my back and still do.

    Just wanted to introduce myself and say hi, and I can not believe I did not find this site sooner.

    Keith
    T-10 Paraplegic since September 1994 - Transverse Myelitis

  6. #46
    Hi Keith, welcome to CareCure! I think you'll find that people here are open and generous in sharing their knowledge, insights, support and experiences. Best wishes to you.
    MS with cervical and thoracic cord lesions

  7. #47
    Senior Member lynnifer's Avatar
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    Hi Keith .. 28yrs with TM here since age 12.

    One commonality I've found among those with paralysis is the inability to heal those wounds ... myself included. Another friend too in the same predicament. Did you find as such too?

    Welcome to CareCure!
    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

  8. #48
    Quote Originally Posted by lynnifer View Post
    Hi Keith .. 28yrs with TM here since age 12.

    One commonality I've found among those with paralysis is the inability to heal those wounds ... myself included. Another friend too in the same predicament. Did you find as such too?

    Welcome to CareCure!
    Hi Lynn,

    Once I get a wound I have not figured out how to get it to heal. I am now trying to focus on prevention. I have tried everything for healing even a wound vac has not done the job. I had surgery seven weeks ago and right now just sitting up in bed for a little while evey day. This wound fairly close to the anus, so I also had ostomy surgery at the same time ( I should have done the ostomy years ago).

    All of my wounds have been on the left butt cheek, the right has never had a problem, knock on wood. I have also had ankle wounds, those I (i should say my wound nurses have been able to get them to heal) have been able to heal.

    My first wound occurred in late 1996, I went through several surgeries between 1996 and 1998, the scar tissue kept opening. Finally I had myofacial (sp?) massage done to the area, worked like a charm. I went ten years without a another wound.

    I wish I could be more help. I will ask my wound nurse what we used, I am having a brain cramp . Not that any of it worked, though I will admit I was still getting into the chair, I suppose I could have been in bed prone 100% of the time to help the healing processes.

    Keith
    T-10 Paraplegic since September 1994 - Transverse Myelitis

  9. #49
    Senior Member lynnifer's Avatar
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    No that's okay - thanks for the info. It seems more with TM have a difficult time healing wounds and since it's autoimmune, it makes me wonder about the state of our immune systems and ability to heal.

    Interesting none the less ...
    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

  10. #50
    Quote Originally Posted by lynnifer View Post
    No that's okay - thanks for the info. It seems more with TM have a difficult time healing wounds and since it's autoimmune, it makes me wonder about the state of our immune systems and ability to heal.

    Interesting none the less ...
    It is interesting for sure! I see by your signature that you are flaccid, I am the same completely flaccid. I am sure that does not help with wound prevention. Do you see an immunologist? I don't but have often wondered if it would be a good idea.

    This is an unrelated question, did you have any symptoms prior to your paralysis? The only thing that comes to mind for me is I had some hip joint pain for a few months prior.

    Do you have any other autoimmune problems? (Psoriasis or other autoimmune disease)

    Thanks

    Keith
    T-10 Paraplegic since September 1994 - Transverse Myelitis

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