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Biopsy-confirmed NLD-SFN + autonomic symptoms - What caused yours?
Neuropathy | Last Active: Aug 29 2:15pm | Replies (9)Comment receiving replies
I also was diagnosed nld sfn from leg biopsy. Symptoms started 4 years ago with widespread sporadic neuropathy and face , chest pain. Because symptoms are mostly relieved with prednisone, and because many other symptoms appeared as time went on, neurologist sent me to rheumatology, calling it immune mediated. So far, labs just show ana positive, and positive autoantibodies for both thyroid labs. They are calling me neuro lupus and will recheck labs in 4 months. I have been on ivig for over a year, and added Rituximab to try and get off these damn steroids which have caused osteoporosis. I'm also taking hydroxychloroquine. Also, my neuro dr said its very common to have autonomic dysfunction with nld sfn, so no need to test for it, it is treated with same treatment I am already receiving.
Replies to "I also was diagnosed nld sfn from leg biopsy. Symptoms started 4 years ago with widespread..."
@tjstout your story is similar to mine. 12 years of nerve pain. IVIG at first because I was diagnosed with CIDP, but steroids were the miracle drug that calmed the pain. I now have osteoporosis in my spine. Thankfully I have been off steroids and nerves have been calm for 3 years. I deal with numbness, cramps, temperature changes, electric shocks, restless leg syndrome and more, but I try to live a fairly normal life. Sending best to you and all who suffer.
I recently found out what my neuropathy is coming from. I have just been diagnosed with Sjorgens disease and I am seronegative so it didn’t show up in my blood. I have had it for years and recently my new rheumatologist put it all together. The neuropathy is Stage 2 of Sjogrens. I also have extreme dry eyes and mouth . Nerves are damaged in my eyes. Everything is being treated separately so have to see 4 specialists.
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@tjstout what are you taking that is helping control your autonomic symptoms?