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Old 10-05-2016, 08:24 AM
Healthgirl Healthgirl is offline
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Join Date: Dec 2014
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8 yr Member
Healthgirl Healthgirl is offline
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Join Date: Dec 2014
Posts: 791
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Quote:
Originally Posted by mskari85 View Post
Hi all -

I was diagnosed with seropositive RA in the beginning of July after 3 years of joint pain. ANA was negative at that time. All Sjogrens, Scleroderma, and Lupus tests negative (other than the ANA, which now just turned positive, of course) ANA is 1:320 homogenous pattern. Also, had a brain MRI - no MS lesions. Rheumy is telling me the positive ANA is from the RA, meanwhile my SFN rages on and has taken over most of my body. I am on MTX for the RA which has calmed the RA down significantly. I am also on LDN (low-dose naltrexone) for my RA and was hoping it would help the neuropathy, but no dice. It does seem to help the RA, however. In fact, nothing that minimizes inflammation has helped my neuropathy (prednisone, for example)

So, okay, doctor tells me that my SFN has to be autoimmune mediated, but has no idea what is causing it. I'm starting to believe it's just some separate autoimmune malfunction where my immune system is attacking my nerves. No Sjogrens symptoms. No Lupus symptoms, other than joint pain, which is the RA. No vasculitis. Just the RA markers, elevated inflammatory markers, and the positive ANA. Also had a positive gluten antibody blood test, but negative for celiac.

I just have no idea where to go from here. I assume at some point, some blood marker will shift for another AI disease that will explain the SFN, but in the mean time, I just sit and wait for that? And worsen? And if this really is an autoimmunity neuropathy, which I suspect it is, then what can really be done? Sometimes I wonder about CIDP, but I have zero weakness. It is all purely sensory.

My new doctor that prescribed me LDN wants to test for lyme through Igenex and for other co-infections and he wants me to start antibiotic therapy for connective tissue disease. Any thoughts on this?

Any ideas or input would be fantastic. I saw a new neurologist who wants to send me to Mayo (which is an hour and a half away from me) and I'm willing to go, but I feel like they're just going to diagnose me with SFN and send me on my way with some gabapentin or something. Ugh.
Is the doctor proposing the antibiotics a functional doctor? Which one is being suggested. Does he/she think you have a bacterial infection?

Also, have you tried plaquenil?
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