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    Let's Talk About TM

    Hi everyone! My name is Jen, and I was diagnosed with Transverse Myelitis in March of 2008. I have met a lot of people in chairs, but most are traumatic SCIs, and I am interested in talking to people who have TM. Anyways...say hello or whatever else...

    #2
    Welcome to the forum, Jen. We have several members with TM and other non-traumatic SCIs - you'll find lots of information here. Best wishes to you!
    MS with cervical and thoracic cord lesions

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      #3
      T11 para since July 29 1985 @ age 12 - released from hospital on my 13th birthday, so 26yrs ago. It left me flaccidly paralyzed from the waist down.

      ETA: Mine took 30 seconds. Had been having back pains for a month or so prior and a wicked allergic reaction to corn detassling .. was on Prednisone at the time. Huge back pain - went to stand up and fell like a raggedy-ann doll. When I hit the ground, a line of numbness started at my feet and crept up my body and stopped at my waist.
      Last edited by lynnifer; 31 Jul 2011, 1:44 PM.
      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

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        #4
        Hi Jen, I was diagnosed in May 2007 and am T7 complete and also flaccid. Mine came on slowly over a few months which I gather is a bit unusual. It took until November of that year before I was in the chair.
        I get a lot of neuropathic pain and seem to be ruled by that and all the drugs for various bits of my body, but on the plus side I still have a good brain!
        Hope you are doing OK, this site is a great source of info, support and comfort, it's the only place where I feel 'normal'
        Good luck

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          #5
          Originally posted by Bonnette View Post
          Welcome to the forum, Jen. We have several members with TM and other non-traumatic SCIs - you'll find lots of information here. Best wishes to you!
          I'm another non-traumatic sci. I didn't have TM, but a spinal bleed.

          Welcome, Jen!

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            #6
            Originally posted by keps View Post
            I'm another non-traumatic sci. I didn't have TM, but a spinal bleed.

            Welcome, Jen!
            Reminds me, I forgot to say what my own issue is - MS primarily, with cervical stenosis and sacral nerve root cysts. And I'm old, too!
            MS with cervical and thoracic cord lesions

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              #7
              And I am a non traumatic SCI, no diagnosis but I bet I had a TM, but we don't use that diagnosis here. T11-12 and spastic.
              TH 12, 43 years post

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                #8
                Hi
                Welcome to the site. TM at 58. Walking 12/6/04. Paralyzed from knees down 12/7/04. Paralyzed from waist down 12/9/04. Some recovery over the next 10 months.

                Life moves on.
                TM 2004 T12 incomplete

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                  #9
                  I had TM at age 11, 1973. Initial complete paralysis, T10... ish. Recovered to walk with cane for many years. Now use a chair for the majority of my mobility.
                  Adaptive Sports Forums.com
                  http://adaptivesportsforums.com
                  Non-commercial adaptive sports user community

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                    #10
                    Newly diagnosed with TM

                    I was just diagnosed with TM on Thursday Aug. 11, 2011. I started 5 days of IV steriods and just finished that yesterday. Today I go back in and see my neurologist. I get the feeling that he really doesn't know what to do. I have millions of questions and not a lot of answers yet. I just feel so frustrated and want my life back to "normal". I don't know what to expect or what other things are going to happen. I seem to be getting worse and not better even after the round of steriods. It is like waking up a new world everyday, that is when I can sleep. I just feel a little lost and confused and not sure where to turn at this point. My family is supportive but equally unsure of what to do at this point. I wish I had a crystal ball and could see the future, as I am sure everyone does. I just don't know what to expect at this point. Thanks everyone, just need some advice from others who can really understand what is happening to me when no one else seems to get it. Kari

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                      #11
                      Welcome to the forum, Kari. I think it's safe to say that everyone here will understand your confusion and wish for solid guidance about what is wrong and possible treatment options. Diagnosis is typically not clear-cut (at least initially) with neurological conditions. Excellent doctors can disagree about seemingly basic issues, and it's scary and frustrating for patients and their families - you are not alone. I don't really have any advice, other than to urge you to keep researching and asking questions - and don't hesitate for a moment to get second and third opinions if you doubt your diagnosis or what you've been told.
                      MS with cervical and thoracic cord lesions

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                        #12
                        I still want a diagnosis and know what happened and what is happening now after 41 years so I understand you are confused.
                        TH 12, 43 years post

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                          #13
                          Just thought I'd chime in. TM in 1994 at C3-4, incomplete. Not flacid, much tone especially on my more affected left side. Spent years in an electric chair because I was very prematurely told I would not walk again by my doc - I didn't know any better and neither the doc, I guess. Came across this website and learned about walking quads. Started rehabbing again. Now I'm part-time walking, part-time chairing(?). Still working towards walking more.

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                            #14
                            Since we're talking TM, I am wondering how many of you, with any autoimmune diseases are gluten sensitive?

                            The summer 2010 issue of "Journal of Gluten Sensitivity by Celiac.com" suggested a link between celiac disease (negative reaction to the protein gluten primarily found in wheat) and autoimmune diseases. They are saying that you incur damage to your intestinal track which results in your gut not being able to contain the protein gluten which gets out into parts of your body it shouldn't be and that causes the autoimmune disease.

                            In my own example, in 1999 I got diverticulitis (and infection of the intestines). I got over the diverticulitis ok. If the article above is right, I might have damaged my intestine at that time and began "leaking" gluten into by body. I got TM in 2004. I didn't find out I was gluten sensitive until 2010 BUT maybe I was gluten sensitive from 1999? Perhaps if I had been tested earlier and gone on a gluten-free diet then, I wouldn't have gotten TM? Who knows? Anyone else with ciliac disease that might be linked to your TM?
                            TM 2004 T12 incomplete

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                              #15
                              Not here.

                              I'd had a vaccination about a year before my onset. Also was on prednisone orally at the time for a bad allergic reaction to corn detassling which lowers your immune system and I was fighting asthma pretty bad. I was into my second week of treatment when TM struck quick.

                              I'd also been punched in the back square where its onset is a month prior at school. Also fell off a horse with enough force to make a 12yr old normal girl pee her pants!

                              Who knows what causes it.
                              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

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