Originally Posted by dcd2103

Hey LeedsLad,

I'm a 38yo male in NYC. I have been suffering from autoimmune SFN for several years. I had a low titer ANA with autoimmune symptoms (migraine, mild joint pain, fatigue) for years, then developed a stomach bug in Costa Rica and the neuropathy came on fast and strong immediately afterwards. I have a technical background and have spent A LOT of time researching and reading about this condition and talking to specialists.

I can tell you that what you describe is a typical post-infectious autoimmune neuropathy. Most likely, the virus put your immune system into high-gear. There is some autoimmune/autoinflammatory mechanism that has been triggered.

The good news is that sometimes, with the right treatment, these things can go away. Not always, but it can happen. The bad news is that you are likely going to require some form of immunotherapy. In your case, the go-to first-line treatment in a situation like this is IVIG. Unfortunately, this is quite difficult obtain in the UK.

I would recommend

1.) talking to a specialist about IVIG and getting the process started ASAP.
2.) trying a course of prednisone as a "proof of concept". Often times a tapered methylprednisone pack can lower the inflammation enough such that you achieve temporary remission of syptoms, which would proove its autoimmune
3.) If you absolutely cant get IVIG, there are immunosuppresive approaches you can take, which you can talk to your dr about (Cellcept, Rituxin, Azathioprine).


I will check this board and can help answer any questions. I've helped quite a few people in the FB SFN group get their bearings straight and I really have dedicated my time towards helping people with this disease. It is amazing the lack of knowledge and understanding your general neurologist has with regard to this. They have such trouble even telling the difference between genetic, toxic, autoimmune or diabetic neuropathy, let alone treating them.