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Arachnoiditis: Trying to find a specialist
Spine Health | Last Active: Mar 31 2:11pm | Replies (325)Comment receiving replies
Hello to everyone. I am new to this forum and found it just by chance online trying to do some research on this awful disorder. I was diagnosed with Arachnoiditis in early 2015 and was simply told there is no cure just pain management. Unfortunately I am at my wits end with the pain and discomfort not to mention how it has turned my life as well as my family’s life upside down. Not only was I diagnosed with this disorder I was also diagnosed with Myasthenia Gravis which is just as rare. I am desperate to find a doctor that not only can treat or help me but that is actually familiar with both of these disorders. I was a registered paralegal and have been unable to work in over 3 years due to the pain. Most dsys I cannot even get out of bed. I am tired of dealing with all the issues of taking pain meds with no relief in site. I was an extremely active person, abid boater and scuba diver. Nowadays I can barely even walk. This is a condition that you have to have to know how intense the pain is. Please if anyone can point me in the right direction I will be forever grateful!
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Stoaway I seen your post I to have spinal Arachnoiditis and hereditary idiopathic neuropath I reached out because of talks about a spinal cord stimulator I had placed almost a year ago it helped some but not to the level that I would go get surgery as a matter of fact I’m having problems and having it removed my pedal insert has came loose that attaches inside and is causing havoc right now . This is a downfall to what could happen so now I have pain on top of the pain that I already had in the first place it’s been extreme pain and isn’t going away until they get me into surgery and seems there in no hurry as there is other surgeries in front of me I would think this is an emergency situation as this could cause even more damage to my spinal cord etc. Also when you have one of these depends on the leads you have you can’t get an MRI only x-rays with the one I have only head ct scan . I’m really worried because I can’t move around to much that it might mess me up even more