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Nerve damage and other issues - no root cause
Spine Health | Last Active: May 9, 2016 | Replies (13)Comment receiving replies
Hi -
I'm so very sorry to hear about what you are going thru.
I am new to this group -- but I had similar gradual deterioration of my ability to walk (which worsened in my 50's), while all my lab tests, EMG, MRI, spinal tap,etc were normal. I saw neurologists at the Univ. of MD, Cleveland Clinic, & other medical centers -- without finding a diagnosis. I was put on Lyrica, cymbalta & elavil to help with the neurological pain-- but these offered little help.
After 3 1/2 years, in Jan 2016, i was referred to a Rheumatologist who ran a host of lab tests & i learned that I have CNS Lupus. (It is very difficult to diagnose.) It doesn't sound as tho you have seen a Rheumatologist yet, but i would suggest that you try to see one as soon as you can. They are extremely knowledgeable about many different kinds of autoimmune, muscle & connective tissue diseases -- several that present with weakness & neurological symptoms (as mine did). I wish you much good luck & improvement in your condition! Please keep us posted.
Replies to "Hi - I'm so very sorry to hear about what you are going thru. I am..."
Hi @workwithkids, I just wanted to add my welcome. Glad to have you on Connect. I also look forward to your contributions to the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/#/!tab=discussions
Searching for a diagnosis for 3 1/2 years is tough. What treatment, if any, are you taking now for CNS Lupus?
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Thank you for your response and for sharing. I have not seen a Rhematologist<br />
and will plan to do that. My condition appears to only affect my motor<br />
part of the nerves with no sensory affects or pain. I will keep you all<br />
posted.<br />
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