Subj: Diagnosed in August 1998- Also have scoliosis Date: 11/18/98 1:52:45 PM EST From: SCU04(AT)aol.com To: tmic-list(AT)eskimo.com Hello to All - my name is Shelia. I came down with this illness in August 1998 while I was taking a shower getting ready to go to work. It felt as though someone was pushing me down by the shoulders as hard as they could and I had tingling in both arms all the way down to the fingertips on both hands. Over the next 24 hours, my left arm was paralyzed, I had the tight band around my waist as many people describe with frequent urination and bowel problems, my left eyelid would only open halfway, but my vision did not seem to be affected. My legs were also affected- I could still walk, but with a horrible limp (that's the best description I can think of). My first trip to the ER resulted in me being sent home with Naproxen and some kind of pain killer and to follow up with my regular doctor. My send trip, which was later that night resulted in the ER doctor referring me for an MRI the next day. My insurance company denied the MRI the next day because my PCP did not order it. The ER doc also had wanted to admit me that night, but my PCP would not approve. Well, I eventually saw my PCP who took one look at me and referred me to a neuro. The neuro admitted me on an emergency basis. I had 2 MRI's, spinal tap and blood work. He started me on steroids and then changed me over the Solumedrol for 3 days and sent me home with a 21 day supply of Medrol to take in decreasing doses. I was out of work for 3 weeks and then went back to work half days for a month and then full time. My spine is affected in the neck area. Before any of this happened, the only symptom I had was the left side of my neck and top of my left shoulders ached - I thought I had bursistis. I do have a question- I was diagnosed with scoliosis as a child and had a spinal fusion. I was wondering if anyone else has a history of this who also has been diagnosed with TM. My neuro said it did not have anything to do with my TM. Too much of a coincidence for me though. Since August, I have improved about 90%. I can walk normally and can do most things. My symptoms that I have at present are: burning sensations in my right hand and arm, bottom of right foot and the back of my calf on the right leg. My left hand has some numbness in the fingertips. I too, seem to be affected by the cold air. It seems as though it makes the burning sensation worse. The cold air also makes my hand stiff. My back has numbness on the right side and all the way down my leg. Although it seems as though my leg has more numbness on the outside part of the leg as does my hand. I have gained back some feeling in the palm of the right hand to feel cold and hot sensations. My back and leg have not regained that though. The burning sensation is the worst when I am fatigued. I do not take any medications at this time. I keep a positive attitude and have faith in Jesus Christ and concentrate on how blessed I am with the recovery I have made so far. When my neuro told me what I had, I had never heard of the disease. He told me it was not rare but not common either. He has also told me that the numbness will be the last symptom to leave - it could take 1 or 2 years and even after that, when I am fatigued I could still have symptoms. He has suggested that I walk a mile a day, but no strenuous exercise. I have learned alot by reading what others have posted. I am very very glad I found this website. I think doctors need to be more educated about this disease. Shelia