Please welcome our new member, Lee Collins. Lee seeks information on diagnosis and care. You may email Lee at leecol211@yahoo.com
Lee writes:
"I'm grateful already to have found this site! I've never had back surgery, so whatever is wrong is not FBSS. I did fall causing trauma to my neck and back. I also had spinal/epidural anesthesia with dura morph (which I had a BAD reaction to) for surgery in 1992. Recently, two epiduragrams , one lumbar and one caudal revealed extensive scarring and adhesions through out my lumbar and sacral spine. I have Raynaud's & Sjogren's syndromes that have been fairly stable lately, but I'm concerned that my history of autoimmune disorders cause me to be at risk for having or getting arachnoiditis. My pain and radiculopathy affect my right lumbar and sacral spine. The symptoms that affect my neck, left shoulder and arm haven't been addressed yet. The idea of continuing to have spinal injections without a clearer diagnosis concerns me. According to the doctor, the injections haven't been very effective because the medications aren't able to penetrate the adhesions. I'm guilty of letting this go on for a long time because I knew that the initial doctors I saw didn't believe me, so I just stopped going. I'm an RN and I understood my symptoms were coming from more than one nerve root, so the clinical picture wasn't very clear, but being treated as if I was fabricating all this when I was in so much pain made it difficult for me to advocate for myself. I gave up! I would greatly appreciate any suggestions about where and how to get an accurate diagnosis and safe effective treatment. Thank You! Lee"
Welcome to our group, Lee. Please email any of our members listing an email address. They will be pleased to offer support.
LWA
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Lee, if you have Raynaud's and Sjogren's, there's no doubt that an autoimmune process is contributing to your arachnoiditis. In my experience of working with the gluten intolerant and/or celiac disease community, your two conditions may be interrelated with an autoimmune reaction to gluten. In fact the conditions may have originated there. Please consider getting yourself checked for celiac disease or at least going on an entirely gluten free diet for a few months to see if any of your symptoms improve. You don't have to have digestive symptoms (or any symptoms at all) to have celiac disease, even severe celiac disease. The diet would not reverse the adhesions that you have but could potentially prevent more from forming.
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