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  • #31
    I have been testet for MS twice because nobody did believe what was happening with me. I don't have MS, nothing on the brain and no sclerosis is the spinal flu. In 2002 and in 2005, I think. And everything is normal over T11/12 and not a sign on anything on the MRI except the T4 signals on the MRI goes slowly. That is the sign that shows I am not pretending
    TH 12, 43 years post

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    • #32
      i was Tested for MS and no MS. i was told since i was 58 i was also to old for an attack. Sue the part of your body you were struck with Tm is it injured? my lower back where i got that sharp pain right before i was parelized is really injured when its hot and humidity is high it hurts very much. how about anybody else.

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      • #33
        Originally posted by TM from PA View Post
        i was Tested for MS and no MS. i was told since i was 58 i was also to old for an attack. Sue the part of your body you were struck with Tm is it injured? my lower back where i got that sharp pain right before i was parelized is really injured when its hot and humidity is high it hurts very much. how about anybody else.
        I had a spinal infarct not TM. I have been tested for MS and everything was negative. I'm sure TM tests have now been done by 3 different expert centers and none have ever shown the monoclonol banding or whatever is the definite sign.

        PA, my infarct or spinal stroke was in the C6-C7 area and incomplete. I have had neck pain ever since the day it hit but now it is mainly from bones and posture while way back it was almost all my upper trap muscles that caused pain. Whether only seems to effect my toes. LOL Those with TM often have a 'banding' feeling near their injury level. Some describe it like a cold steel tightening around them. None say it is painless.
        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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        • #34
          Hi Sue, Thanks so much for replying ...... I did forgot about that banding, and that makes sence when the weather is so hot like it is here that its so painfull because i kinda allways feel a little swelled up when its hot out. did you get imflamation in the spinel cord with an infart or spinel stroke?

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          • #35
            TM here in 2008, Doc's told me that many times they never really find out what causes it. Said that it stems from the body not recognizing its own tissue and attacking it, just so happens it occurs on or near the spinal cord causing inflammation and lesion. I got up one morning to go to the bathroom and hit the floor, no warning, no pre-cursors...

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            • #36
              hello CubGuy thanks for replying....... 2009 for me, Kinda like you hit me like a ton of bricks. t11 L1 S1 i have no ankel movement i wear afo on both legs walk with a walker. did you get that sharp pain in your back right before you lost feeling. that area hurts Sooooo bad i take gabapenten it dont touch the pain. this hot summer it feels worse.

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              • #37
                TM,

                Had soreness in my back about two weeks before, kinda like you feel when you pull a muscle. I was a Flight Attendant so figured I had picked something up wrong, or bent the wrong way when cleaning the plane. Went to the chiropractor, he did the whole massage machine, and hot stones thing but other than that, no precursors that I recall.

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                • #38
                  My spinal stroke was from ischemia or a lack of blood to the spine so just the small secondary cascade imflamation seen in most non-traumatic cases. I did get the steroids as if I had broken my neck though and not as if were an MS attack. Maybe strokes from embolisms, bleeds, cause more imflamation.
                  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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                  • #39
                    Hello Sue, Iwas reading in the arkives about ischemia, I never knew that there were so many causes of strokes . most of the strokes at the rehab i go to are when the left or right side is paralized. a lot of the people are walking. there is a friend with a spinel stroke that happened in surgery she is not walking. thank you so much for replying .

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                    • #40
                      I don't have TM, but I had (have?) ADEM (Acute Disesminated Encephalomyelitis). I always think of TM as horizontal atraumatic spinal cord damage, and ADEM as vertical atraumatic spinal cord damage. Although, I have come to find out that ADEM can be extremely variable as far as where the damage is and what the resulting issues are. My damage runs through the cervical region and into the thoracic region and the lesions were described as "a string of pearls". (So poetic.) Because of the lesion locations, my resulting issues are completely sensory and effect my entire left hemisphere, armpit level down. It could have just as easily been motor nerve damage, but wasn't.

                      All these atraumatic SCI's are regarded as disorders related to MS and the thinking is that there is a similar autoimmune root cause with many variations. There is another thread on this forum about a study showing that an immune response to a particular protein (KIR4.1) was demonstrated in almost half of the MS patients studied. (http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=6619)

                      I would be very interested to know if these reseachers have considered extending this study to persons with TM, ADEM, Devic's, Optic Neuromyelitis, etc. It would not surprise me if it was determined, years from now, that there are many viral antigens that have a molecular structure that resemble that of certain proteins found in spinal cord tissue. Depending on where the virus crossed the blood-brain barrier and how it's attacked by the body, the damage could be quite variable. (This is a layman's poor attempt to understand all this, but I think this study is significant.) A better understanding of the causes could lead to better treatments.

                      Two years ago, I was a donor for the Accelerated Cure Project. This is a non-profit organization that seeks to advance the timing of a cure for MS and related disorders by providing a repository of data and samples available for researchers working towards a cure. Information about this project is at: http://www.acceleratedcure.org/ The project was initiated in 2001 and has been steadily growing. They now have had over 3000 study donors (of data and biomaterial). They have provided data and biological samples to over 60 studies. "A key feature of the ACP Repository is that scientists accessing our samples must commit to sharing any experimental results and data with ACP so other users have the opportunity to further explore or build upon those results, formulate new hypotheses, etc."
                      Last edited by KYLady; 08-05-2012, 02:38 AM. Reason: Provide info about ACP

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                      • #41
                        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.

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                        • #42
                          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.

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                          • #43
                            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.

                            Comment


                            • #44
                              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.

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                              • #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

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