Re: [TMIC] A question

[Poonam Mahadev Thapa]

Hi Karen   That is exactly the kind of pain Dev feels. It starts from lower back and takes the Sciatic Nerve path. His left hip hurts constantly and his left leg seems heavy and he can hardly lift it to take a step. His pain and numbness is on the outside of hi thigh, leg knee and runs from hips to toes. We are also looking for answers. Like you his spine MRI is clear but his brain had a a few more lesions than before. Have you had a brain Scan done? I am not too conversant with the disease yet but am learning something more daily. So please don't get too worked up if I suggest the brain scan, I may be wrong. No harm in asking your Neuro about it. that is what we have been doing. All the ideas and suggestons posted on this mail list gives us enough questions to ask our doctors and look for answers.   " Little knowldge is better than no knowledge at all"   Nima       ----- Original Message ----- From: Karen Doyle To: TM List Sent: Friday, February 10, 2006 8:38 PM Subject: [TMIC] A question I am a relative “TM Newbie” – hit Sept 26, 2005.  I have only been watching the numerous emails for a couple of months and have come to appreciate just how lucky I am I had a truly minor “hit” followed by relatively minor residual issues.  I’ve felt that my problems were so relatively insignificant, that I never participated in discussions   However, something someone said the other day really piqued my interest here’s my short and lucky story:  my initial pain was the neuropathic banding that you all talk about – not constricting, just tingling, and painful to the touch (my clothing hurt).  At first, it was confined to my rib cage.  When I began the Solumedrol it had significantly lessened, but the neuropathy/myelopathy moved to my waist to my upper thighs.  By the end of the Solumedrol (5 days) I had NO problems in my trunk, but the pain and numbness in my waist-to-upper thighs was markedly increased.    Four months out and I am left with the banding myelopathy in my thighs, but my biggest problem is one that my neurologist cannot explain and has told me to see an orthopedist my legs are just not what they were on September 25th.  They feel “heavy” and when I exert too much or sit too much, I can barely walk until I stretch them out.  The center of the pain seems to be in my sacral region, but the pain is generalized to my hips and my pubic area (it follows the general PATH of sciatic, but more inward – the pain runs right over my pubic bones).  The sensation is different from the banding – it feels like a pinched nerve that delivers numbness and PAIN and weakness.   I have finished all the MRIs and X-Rays that my neurologist wants to order (full spine).  My MRIs are CLEAN; no lesions.  I am left with this pain in my sacral/pelvic/pubic/upper thigh region that is aggravated by exertion and especially sitting (I’m a computer programmer, so sitting is what I do nine hours a day).    Is it possible that I was mis-diagnosed with TM?  Is it possible that the Solumedrol had something to do with this (since I had never had any such pains until the Solumedrol was finished)?  Is this feeling possibly part of TM and my neuro just doesn’t know it?  I would surely like to know if any of you have any such problem – residual pain WITHOUT any MRI-detected lesions   Confused in Philadelphia Karen Doyle