Gaylon, I'm really sorry that you have had to go through so darn much. Thank you for taking the time to share your experiences with us. It took almost 3 months before I was diagnosed with TM, and unfortunately I was sent to a neurologist who just dropped the ball. When he finally told me that I have TM, I had no clue what he was talking about. He just told me "this is as good as it's going to get" - Even though I didn't understand what I had, I am not a quitter and I told him I chose not to believe that and left his office - and never went back. But I did go on the internet, found the Transverse Myelitis Assoc and this very warm and welcoming group and a wealth of information. I am so thankful.
Linda in Idaho ----- Original Message ----- From: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> To: [email protected]<mailto:[email protected]> Sent: Friday, March 07, 2008 8:28 AM Subject: [TMIC] Part 4 of "Acceptance is tough" The Emory backbone specialist said. "I see a few problems with your back but none of which would cause the symptoms you have explained to me. You should not be Here, you should go see a neurologist. I'm not a specialist in that field but you might have some thing viral in your spinal cord. So get you an appointment with a neurologist. There is nothing I need to do for you". Now here we go back home and make an appointment with a neurologist. Of course that is another 2-3 weeks to get in his office. By this time I'm starting to show Some improvements with my balance and occasionally only use 1 cane to walk with at times. I have my visit with the neurologist which was very young like just out of medical school. He checks me out and pokes me with a needle all over finding out that I was totally numb and I remember being very surprised my self and even questioned him on the fact " are you sure your using a sharp needle?" He just smiled and said Yes. Thank goodness " I guess" that I could feel the vibration from the tuning fork on my big toes. The doctor looks at my MRI's and says I need you to go get another MRI. I'm like isn't the three you have now good enough? He said not really cause this one needs to be done with Contrast. So Now that takes another week. I remember telling my wife "ok this is it, this is my last MRI, I'm not having another one" I have never been so tired of being shoved in a tube in all my life. I was asked to have a nerve test done on my next scheduled visit after the Contrast MRI and Wow oh Yeah that was fun. Having the living day lights shocked out of you for 45 minutes straight uh huh yeah fun time there! Ok now I'm laying on the table "with smoke rising from my charred body from the voltage test"lol and the doctor comes in says I'm going to have a listen to your muscles,Ok, He proceeds to jab me with a needle and said "hmmm you have the thickest skin I've ever seen, Let me get a longer probe" So I get to listen to my own muscle move on Loud speaker in the office. Interesting. He finishes up , leaves, comes back sits down beside me and says " You have Transverse Myelitis". Rather than him going into great detail (which now I know would have taken him forever to fully try and explain the illness) he said do you have internet access? I said yes and he wrote down the name of my illness and said look it up on the internet and you will be able to read a lot of information about it. And boy he was right, the info. is vast on the subject. Of course the doctor told me their was no cure for the illness and he could perscribe me Neurontin for my nerve burning pain. On my next visit with him I told him the Neurontin was causing me horrible nightmares, all of which I had never experienced before , and I mean horrible nightmares. He then switched me to Lyrica and although it does not make the constant burning and needle feelings go away. Lyrica does help to lower the intenseness. I now am able to walk without a cane and do physical labor work to some degree. I get fatigued a lot quicker these days and still feel very uneasy on ladders and depending on how hard I'm pushing myself sometimes the burning effects start hitting me hard. When I talked to the doctor about this he said for me to rest more in between my work so my spinal cord want over heat so bad. He is right, sometimes I can feel the heat inside my back from my spinal cord. My body still has a lot of numbness and I still cannot feel hot or cold on most of my body, but some sensations have come back on my hands and the tops of my arms. The doctor told me that it will take 2 years for me to know how much recovery I will have. He said most likely ever how you are 2 years after having TM that is how you will most likely stay. He also told me that 1/3 of the people that get TM are paralyzed for life. 1/3 have certain problems from TM and just have to live with it after 2 years. And the other 1/3 heal after 2 years and never even know they had TM with no symptoms at all. I can only hope that one day their will be a pill to take and make this illness go away. Gaylon, in Georgia ------------------------------------------------------------------------------ It's Tax Time! Get tips, forms and advice on AOL Money & Finance.<http://money.aol.com/tax?NCID=aolprf00030000000001>
