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    #16
    You should really check out KKI and the International Center for Spinal Cord at KKI with Dr. John McDonald. My son is a T-10 complete, but they offer encouragement and hope with restorative/repetitive therapy. They have seen substantial recovery from TM patients over 2 years out. I watched a 4 year old walk after having TM for 3 years. Don't give up!

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      #17
      Sorry

      Thank you but its not the same for everyone. Im not sure what TM i am but i dont have hip flexors, butt muscles, and much more. My legs are thin because i cant use them. It hurts to walk. I spent months in inpatient theropy trying toget better and NOTHING.

      Also i dont believe in hope to much extent anymore.

      Im a lil older and i dont have the energy (yes im only 16 but its not worth waisting my childhood in hospitals working for something that wouldnt make me any more or less of a person).

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        #18
        HTTWHEEL Where are you from? If you are 16 you can not give up i am 41 and have not given up hope still getting return and i am almost 5 yrs with TM. Try to fill out your profile so we can help you anty
        Be always determined in Life and Love

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          #19
          I'd have to agree with anty ... this is the time you SHOULD be trying to get return. You aren't that far out .. you're young .. whatever you do now you're setting yourself up for the future. If you can walk a little now, try to expand on that and use that potential!

          I'm telling you right now you'll regret it if you don't.

          P.S. If you can't feel it when you pee - I highly doubt you're going to feel anything normal when you have sex. You will feel something - but it won't be close to normal. If you're only 16, you've got lots of time for that i.e. it's not a priority! This is your cyber mother speaking! lmao
          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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            #20
            My son's muscles are completely flaccid. He has nothing from the waist down. We can't give up hope. His injury from TM started at T4 and the damage included the rest of the cord. He also has nerve damage. We aren't giving up! We go to KKI for 1 week every 3 months and see Dr. Kerr. Their therapy can be followed at home.

            Please don't give up! There is hope!

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              #21
              Originally posted by HttWheel
              Thank you but its not the same for everyone. Im not sure what TM i am but i dont have hip flexors, butt muscles, and much more. My legs are thin because i cant use them. It hurts to walk. I spent months in inpatient theropy trying toget better and NOTHING.

              Also i dont believe in hope to much extent anymore.

              Im a lil older and i dont have the energy (yes im only 16 but its not worth waisting my childhood in hospitals working for something that wouldnt make me any more or less of a person).

              HttWheel,
              It's up to you of course. But to not give it your best shot..may in the future not only having you asking "What if.." but you may really be depriving yourself of what nature is capable of doing. And especially now when science is advancing so rapidly. You want your body to be in the best state you can accomplish with what is available. But it is up to you. Noone can make this decision for you.

              Your question about sex. Well if you do have feelings and are already having sex..the only way to really know your own body is to masturbate.

              Sex is more then just a physical activity.
              And one needs to be sure about everything involved as far as disease etc is concerned before jumping into sex. Especially now.

              Good luck.
              Life isn't about getting thru the storm but learning to dance in the rain.

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                #22
                I tried, i tried for 2 years and no matter what every decsion anyone makes there will always be that "what if" like if i were to go see theses doctors and spend time in the hospital again, what could have i done instead? something that maybe helped someone else instead of just thinking about myself. I put my family though so much being in and out of doctors offices, always telling myself that i will get better, i will be normal again but then i come to realize that my legs are as strong as they can be, i am just missing some of the muscles that never came back. Plus i dont have the kind of money it would take. Not everyone can walk away from this like nothing happened. The best day of my life was when they told me that walking wasnt going to be a realistic goal, because now i get to be a kid, thats all i want. To have a normal life, and i can settle for somewhat normal. Id give anything to walk again, but the fact that that isnt going to happen any time soon, i have to except it and get over it before i give myself false hope and then get hurt later on when i realize all of it was for nothing! i am healthy.

                And i know about STDs, im not jumping into sex, i am just wondering if my sensation would come back after a certian time. and what do u mean especially now?

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                  #23
                  Originally posted by HttWheel
                  I tried, i tried for 2 years and no matter what every decsion anyone makes there will always be that "what if" like if i were to go see theses doctors and spend time in the hospital again, what could have i done instead? something that maybe helped someone else instead of just thinking about myself. I put my family though so much being in and out of doctors offices, always telling myself that i will get better, i will be normal again but then i come to realize that my legs are as strong as they can be, i am just missing some of the muscles that never came back. Plus i dont have the kind of money it would take. Not everyone can walk away from this like nothing happened. The best day of my life was when they told me that walking wasnt going to be a realistic goal, because now i get to be a kid, thats all i want. To have a normal life, and i can settle for somewhat normal. Id give anything to walk again, but the fact that that isnt going to happen any time soon, i have to except it and get over it before i give myself false hope and then get hurt later on when i realize all of it was for nothing! i am healthy.

                  And i know about STDs, im not jumping into sex, i am just wondering if my sensation would come back after a certian time. and what do u mean especially now?
                  HttWheel,
                  I hope I didn't hurt your feelings.
                  It's very difficult to put all that is going on into a straight line..especially when you are a teenager that happens to be handicapped.

                  If you feel you have done all that is possible for your situtation..then that is what it is. Noone, especially someone like me that doesn't really know your situation can say any differently.

                  Just from your initial post..I read it wrong I think.

                  But there are many things now that will possibly in the future really help your problem. You are correct though..you MUST live your life. And live it as fully as possible..it's the only one we have.
                  Living with a disability is a never-ending learning process though. But you can do it..and happily so I think..it takes time to adjust to life situations..not only for us..but AB's too. Sometimes I think we are better at it though. Quicker at the draw.

                  The especially now meant..now there are so many sexual diseases on file. Many without good treatments really.
                  And many are even silent until they do major damage to our bodies.

                  I don't know about loss of sensory. I had polio. You don't loose sensory functions.

                  Your a spunky gal. That will be to your advantage.
                  Life isn't about getting thru the storm but learning to dance in the rain.

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                    #24
                    hey i just got TM like three weeks ago and i got like muscle spasms that started in my but and then travelled quite painfully to my legs leaving e unable to walk,,,, but as the hours went by i regained the ability to move my toes and legs etc. So like i said it started three weeks ago but nw i am able to walk with a slight limp and i have regained bladder and bowel control but ya i have to go when i have to go. I was catharized for two weeks. I hope I am on my way to a full recovery but I am soo impatient. It sounds like i didn't get it too bad.... Ryan

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                      #25
                      Lots of people recover substantially from TM Ryan ... sounds like you're one of the lucky ones. Keep up your exercises and maximize what you have recovered with! Good luck.
                      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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                        #26
                        I have had TM for a month. I can walk with a limp but my entire right side is numb. My right hand right where the fingers start feels like there is no circulation. (forgive my spelling errors) Is this normal? My legs get weak and I have to go slow but I am walking. The Dr. has me on Prednisone and Gabapentin. I turned 50 in the hospital with this, belive it or not. How long does it take to see improvement. I know I may be asking an impossible question, but the dr. really does not tell me much. Just that he can treat the pain. Can anyone offer any advise on things I can do to make this improve or is there anything I can do. I appricate any advise I can get, this is still so overwhelms me at times. I know I am blessed to be able to walk don't get me wrong, but I need to know at this point if people do get feeling back that have this. Mom maw Penny

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                          #27
                          [quote=penny Grubb]I have had TM for a month. I can walk with a limp but my entire right side is numb. My right hand right where the fingers start feels like there is no circulation. (forgive my spelling errors) Is this normal? My legs get weak and I have to go slow but I am walking. The Dr. has me on Prednisone and Gabapentin. I turned 50 in the hospital with this, belive it or not. How long does it take to see improvement. I know I may be asking an impossible question, but the dr. really does not tell me much. Just that he can treat the pain. Can anyone offer any advise on things I can do to make this improve or is there anything I can do. I appricate any advise I can get, this is still so overwhelms me at times. I know I am blessed to be able to walk don't get me wrong, but I need to know at this point if people do get feeling back that have this. My bladder is weak but as long as I go right when I feel the urge I am ok, so that has not been affected.

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                            #28
                            Penny, where are you located and what kind of doctor (neurologist, internist, etc.) is treating you? Have you been to rehab or had physical therapy? Were you treated with methylprednisolone or Solumedrol when first diagnosed?

                            And yes, many people continue to get return of function and feeling as time goes on. I had a great deal of icy, burning pain in my right arm that started about 3 weeks after I had my spinal stroke (much like TM) and it disappeared without treatment in about 3 months and although I didn't get all those muscles back (in that arm) I got a lot more than on the day this nightmare started and those muscles are pretty strong.

                            You need a good neurologist, a good physiatrist and good rehab to get as much of your old self back as possible. It helps to write down questions you have before appointments and don't leave until the doctor answers all of them--in English!
                            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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