Undetermined Auto Immune

Posted by dstone501957 @dstone501957, Jun 25 8:59am

I have had an undetermined autoimmune disease for over 15 months. My Neurologist did not want to address the underlying cause of Small Fiber Neuropathy. Neuromuscular blood work for FGFR3 antibody was 7,500. ANA was 1:320, but recent test was negative. I have gone from good days and bad days to almost all bad days. Primary symptom is constant chills. When my Primary Care Physician (PCP) attempted to identify with blood work, an M protein spike showed up. Seeing Oncologist every 6 months for MGUS, ranges between .5 and .7. At this level Oncologist does not believe it is causing the neuropathy. Seems like I am on my own. Specialist at top hospital, Barnes Jewish Christian (BJC)/Washington University in St Louis couldn't care less. May or may not be related, but I have had a dull burning ear pain in right ear since all of this started in March of 2023. Looking for recommendation on medication to help with the autoimmune that I can discuss with my PCP.

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artemis1886 | @artemis1886 | 7 hours ago

Ultrasound did not show the actual inflammation. We tried it. The biopsy confirmed it. The salivary glands has inflammation in the cells that can viewed under a microscope. Dr Anne Oaklander in Boston told us ultrasound was worthless but the biopsy positive.

artemis1886 | @artemis1886 | 6 hours ago

There ultrasound is insufficient and does not show inflammation. The salivary glands removed by ENT he took four came back positive.
I have autoimmune severe axonal sensorimotor polyperipherial neuropathy, small fiber neuropathy, dysautonomia, cardiac autonomic neuropathy ( my blood pressure goes up and down, along with my heart rate). Sjogrens, lupus, RA, ehlenor damlos, seizures linked to neuropathy.. I have had four left hip replacements and actebulum fracture, right hip replacement due to loosing blood into the bone by the neuropathy. I just fell fractured three ribs and my back. This has been going on since 2002.