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Sjogren's Syndrome?

Autoimmune Diseases | Last Active: May 1 8:15pm | Replies (43)

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Profile picture for gypsyblue @gypsyblue

I too have experienced the whole body pain phenomenon!
Unfortunately, pain meds was the treatment. Along with all modalities that gave relief. Ice, heat, massage, water therapy, hot or cold old, topicals, etc.. Whatever gives relief at the time. My inflammatory markers are always all over the board. I have all the symptoms of Srogrens, but test Seronegative. I had JRA as a child, but my RA factor is negative. The consistent positive is HLA-B27. Even with that, my symptoms are consistent with numerous autoimmune diseases. Most recently I had a severe flare that required the ER and more pain medication that I could ever imagine. My neurosurgeon felt something autoimmune was attacking my cord and said I need to find a good neurologist. I have seen several and they are all good but, they can’t figure it out. The other problem is they all know each other and then the new ones will not see me because I have been seen by others in the same system. My PCP will personally call and explain my situation and the neurologist still will not see me.
That really limits my options.

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Replies to "I too have experienced the whole body pain phenomenon! Unfortunately, pain meds was the treatment. Along..."

@gypsyblue

Did you have these blood tests done: Axonal Neuropathy Profile, Autoimmune Neurology/Comprehensive Paraneoplastic Profile, CIDP? These tests are ordered by neurology.

@gypsyblue you need a neuromuscular neurologist
Test emg/nerve conduction test
Biopsy- small fiber neuropathy
Spinaltap - CIDP

Neurology is specialized just like orthopedic doctors.
Neuromuscular neurologist specializes in different neuropathies. Some neurologist specialize in seizures, Parkinson’s and so forth. You don’t get the right type neurologist they can’t help you.