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    Newbie with TM

    Hi,

    I am new to all of this, forums, message boards, and pain in all realms of life. I hope I'm in the right place. Wow, I'm so sorry there are so many, many people dealing with "stuff".

    Late 9/06, I started with numbness and pain on my right side back, trunk, leg feet and toes. Some on the left leg and toes. In the last months I have seen my GP, neuro and rheum. GP says I have diabetes, rheum says I have Sjogren's Synd. and a heart murmur, neuro says I have incomplete TM. I still have not gotten any treatment for the TM. Continuous pain and spasms are the issue, not to mention fear.

    I am wondering if anyone has TM caused by an autoimmune disease? I am new to all of this, so I trying to look everywhere I can for info and help. Shoot, I may become a doctor after this is all said and done!

    Anyway, thanks for your input.

    Chele

    #2
    Welcome to our forums.

    Have you been evaluated for possible MS? What tests have you had?

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      #3
      I have TM from Lupus. Feel free to ask me any questions.
      "Dream as if you'll live forever, live as if you'll die today." ~ James Dean
      http://www.kristi-allen.com

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        #4
        TM - no cause here since age 12. Completely paralyzed from waist down - now 34yrs old. Welcome!
        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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          #5
          Hi TM here for 5 years now from having a epidural. It slowly came on it took 18 months after the epidural. I was a complete c-5 now incomplete and still getting return. Any questions just ask anty
          Be always determined in Life and Love

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            #6
            i'm TM from a virus as a baby..had it almost 24 years..pm me with any questions.

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              #7
              Originally posted by Chele
              Hi,

              I am new to all of this, forums, message boards, and pain in all realms of life. I hope I'm in the right place. Wow, I'm so sorry there are so many, many people dealing with "stuff".

              Late 9/06, I started with numbness and pain on my right side back, trunk, leg feet and toes. Some on the left leg and toes. In the last months I have seen my GP, neuro and rheum. GP says I have diabetes, rheum says I have Sjogren's Synd. and a heart murmur, neuro says I have incomplete TM. I still have not gotten any treatment for the TM. Continuous pain and spasms are the issue, not to mention fear.

              I am wondering if anyone has TM caused by an autoimmune disease? I am new to all of this, so I trying to look everywhere I can for info and help. Shoot, I may become a doctor after this is all said and done!

              Anyway, thanks for your input.

              Chele
              Welcome to the land of weird Chele. No treatment for TM? No steroids or plasmapharesis? Umm, can I ask where your doctors are located? I believe you can still try plasmapheresis even if you never had methylprednisolone (the steroids). I echo KLD..what tests were you given?
              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


                #8
                Thank you so much, everyone, for responding and your warm welcomes.

                Tests - MRI with and wo contrast of total spine and brain. VRP (I think this is what is was called) an eye to brain test, UA, multitude of blood work to determine an abnormalitis such as lupus, aids, etc. The blood work only showed an abnormality for Sjogrens. MRI showed nothing.

                My doctors are located in Fort Waye, IN. Do steriods interfer with diabetic medications? Thought I read that somewhere - not sure any more. Plasmapheresis - I am not familiar with this. I'll search more what this is all about.

                I see my neuro next week and I want to be as informed (armed) as possible. Not too happy with him.

                Chele

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                  #9
                  Hi

                  Ive had Tm for 3 years, im a TM10 complete (paralized from my lower abs and down) caused by a cold lol yea suckie way 2 go down but shit happens. Anyways, for me I went on anabolic steriods to stop the inflamation, and if they havent taken that messure with you and u have TM then your stable. But for the leg pain what helps me is keeping my legs elevated and get like a massager and use that...i cant feel my legs but it still helps. Hope you feel better

                  Sarah

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                    #10
                    Originally posted by Chele
                    Thank you so much, everyone, for responding and your warm welcomes.

                    Tests - MRI with and wo contrast of total spine and brain. VRP (I think this is what is was called) an eye to brain test, UA, multitude of blood work to determine an abnormalitis such as lupus, aids, etc. The blood work only showed an abnormality for Sjogrens. MRI showed nothing.

                    My doctors are located in Fort Waye, IN. Do steriods interfer with diabetic medications? Thought I read that somewhere - not sure any more. Plasmapheresis - I am not familiar with this. I'll search more what this is all about.

                    I see my neuro next week and I want to be as informed (armed) as possible. Not too happy with him.

                    Chele
                    I think the steroid/diabetes problem is dependent on how bad your diabetes is. Plasmapherisis is just sending your blood out of one arm through a machine that cleans it of whatever they think you have (OK, so it's a tad more complicated then that) and you get it back in the other arm. Make sure to have plenty of blankets on hand if this is done. When people donate just platlets this is the same procedure. Safe but the blood cools a bit outside the body so you get the chills as it flows back in. The nearest expert I know of is at the Mayo Clinic in Rochester, MN.
                    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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