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DiscussionArachnoiditis: Trying to find a specialist
Spine Health | Last Active: Nov 30 4:16pm | Replies (326)Comment receiving replies
Replies to "Send and and all discs you may have and if you don’t, get them, to Dr...."
Thank you. I’m very frustrated that the diagnosis does not want to be discussed. I’ll reach out to Dr Tenant
Thanks for posting,,,this is the first time I've been on this site..I was diagnosed by sending dr Tenant my mri 5 years ago, along with the Swedish pain and neuro group in Seattle,,, but since I have moved to NC they don't believe the dx history I have on paper at this pain clinic mostly,,,a have a new PCP also now and he won't deal with the pain part or the ankylosing spondylitis and severe stenosis in cervical,,along with myelomalachia in cervical near 5-6.. so I'm hoping to find a neuro group associated with UNC that has a few facilities in this smaller town of Lumberton... UNC chapel hill is where their main group is and its almost 3 hours from me... please send me a copy of the Dr. list that is hopefully familiar with AA while I can still walk.. which is getting harder and harder,, I also have to put petroleum jelly in at least one eye every evening,,,( very small amount and then patch over it for at least an hour ) my left side is barely usable and it's progressive,,tho very slowly... e.g. went from holding phone w left hand from 10 minutes to 1 minute in last 5 years...
I feel like I have giant slivers in arms and legs and hands and feet tingle and partly numb constant for the last 1.5 years... one radiologist said no AA a few years ago so the pain dr picks that one to listen to instead of the orthopedic that spotted the clumping who sent back to radiologist and then he saw it also..i think they look for the equina ... thing where its totally obvious before they might think about helping better... they did see the scaring in cervical so they do try and help a little but still dont prescribe a inflammatory that breaks the blood brain barrier like minocyclin or acetozolamide which did help before when other dr prescribed it a year ago... had to move away from WA tho after wife of 25 years wanted divorce before I end up in wheel chair ... which I do need if trying to stand or sit more than 40 min... any help would be nice...please use the add photo / file option and see if you can list drs there... thanks,,, RichW