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Living with Syringomyelia

Spine Health | Last Active: Sep 19 10:18am | Replies (71)

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@fitchizumi

Hi Justin, I understand that people are born with these in their system. Mine is in my cervical spine C2 to 7, I Belong to an organization in Texas you can read the newsletter ASAP.org Been a member since 1992. My pain started after a Trauma when I was 24. 1964 .I found out the problem in 1992. And MRI showed what I had. I have been on Neurontin since then. I Live with nerve pain my right trunk And extremity. The Neurontin help somewhat but, I can’t take too much of it ,makes me very tired and dizzy. There are groups around the countryhaving meetings. I am never without nerve pain . As I tell my doctor it runs from “stem to sternum.” Get yourself a very good neurologist who has knowledge of Syringomyelia. Years ago before 92 I was told it was in my head! Some neurologist have limited knowledge of Syringomyelia you don’t want them. Do you have Chiari malformation also? Syringomyelia & Chiari Project po box1586. Longview TX 75606-1586 Phone 903-236-7079 Get in touch with these folks also they can be a great help.

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Replies to "Hi Justin, I understand that people are born with these in their system. Mine is in..."

Hi there, I live near Longview and am curious if you are located nearby. I was recently diagnosed with Syringomyelia. No Chiara has been mentioned or found. Thanks!