Hello, This is my first posting.
I have had very painful small-fiber neuropathy since 2013. It started with mild tingling in extremities and progressed quickly to pain of all types. I have also lost some sensations in different areas of my body.
The pain has now spread to nearly my entire body. My autoimmune conditions were extremely flaired-up after contracting Covid in early 2020 resulting in the need for weeks of steroids. I am now on hydroxychloroquine for the inflammation.
Mindfulness Based Stress Reduction (MBSR) has helped me deal with the symptoms. Low-dose Naltrexone, Medical Cannabis, R-Lipoic Acid and Acetyl-L-Carnitine give some limited relief of pain.
We have traveled extensively for medical consults and I finally had a skin biopsy last year that was positive for small-fiber sensory and autonomic axonopathy, and another for Sjogren’s. I have multiple autoimmune conditions, previous surgeries, etc. My neurologist believes my disease is likely ganglionopathy caused by Sjogren’s.
After much delay due to insurance reasons I am soon to start IVIG home-infusions.
I would most like to connect with anyone who has similar diagnoses and treatment with IVIG.
May we all be well, Hope