Hi, Susan.. I don't expect you to answer but just wanted you to know a few things I found by my own studying and from the first neuro. that saw me at Harborview in Seattle. He mainly said no one really knows the whys of TM but there all sorts of theories and the main one is the chicken pox/shingles virus. How true? They just don't know. We can't believe everything we read because it is so varied and different yet some of us have such similar stories.
I also saw a neuro about two years ago and he didn't know anything either. We then went to a neuro at Virginia Mason Hospital in Seattle who then sent me to Johns Hopkins in Maryland. The neuro there said (hmmm) I had "TM" and until they approved stem cell transplant, there probably would be nothing than could be done except to treat the symptoms. There is a 'common' banding (tightening) that seems to be pretty common and it seems to be where the 'damage' is on the spinal cord. Mine feels like a metal band right at the T4 level where the damage was done to the front part of my spinal cord. I feel it all of the time but it gets pretty painful when I'm tired or do too much. I've been tested several times for MS and keep getting a negative because whatever they are looking for in the brain is not there. Another theory is that TM is NOT a precursor to MS. I, too, keep improving a little bit as I go along and that has been since May of 2005. I do know that if I quit the water therapy (which I do in our hot tub) and walking I will get weaker and feel I would turn into an invalid which I'm too stubborn to let it get there!!! I love life, family, and friends too much to give up, by golly! I also feel I've gotten this far mostly because of prayers and a whole lot of stubbornness and tenacity! We live in the woods in the corner of Washington state, near Oregon and Idaho and today we've had snow, hail, rain, and beautiful sunshine!! Right now it is snowing and the sun is also shining!! I wish I could take a picture for you!! So wonderful to be chatting with you but I'll leave for now. Looking forward to hearing from you, again, Susan...j -------Original Message------- From: Susan Lezar Date: 4/21/2008 2:13:37 PM To: jrushton; [EMAIL PROTECTED]; tmic Subject: Re: [TMIC] How does TM Compare to Shingles Pain Susan in South Africa, Interesting? I saw the original author's question and the replies. I had pain in my belly button which proceeded into my back, (like a belt being pulled tighter) and when doctor saw me on the Friday he said there was a bout of shingles going around. He did look for a rash on my lower back but none. But wrote it down to shingles. The Sunday following I became paralysed with the diagnoses TM. Makes me wonder? Is everything you read true? Is TM onset of MS, is it is post set of shingles? Can everything really matter what you read on the net? How come 4 years later and I am still recovering? ..... I am busy writing a letter to the list for all to read. Just a little busy right now doing other stuff but please look out for my mail in your letterbox. And by the way, when I woke up the morning the sky was beautiful. It rain here in Durban South Africa and everyone was in a twizzy getting ready for the day. I thanked God I am alive. I plan to live my life to the fullest God bless you all Susan ----- Original Message ----- From: jrushton To: [EMAIL PROTECTED] ; tmic Sent: Monday, April 21, 2008 1:40 AM Subject: Re: [TMIC] How does TM Compare to Shingles Pain I can't speak for the others, Patti, but the tingling in my legs that started the TM was much, much different than shingles. It wasn't painful at all, just noticeable. Then when the pain started at the groin area and proceeded into my back, there just weren't too many words to describe how painful that was. My daughter had to tell me to breathe because just the motion of breathing made it worse. The shingles pain was more like a 'burn' pain. I've had patients that had it so bad that just the touch of their clothing would bring tears to their eyes. j -------Original Message------- From: [EMAIL PROTECTED] Date: 4/20/2008 8:35:01 PM To: tmic-list-at-eskimo.com Subject: [TMIC] How does TM Compare to Shingles Pain Well, the subject line says it all! I noticed a few had shingles before TM and I wonder if the tingling, burning feels the same? I've heard some horrid stories about shingles. Patti - Michigan
