Hi Healthgirl. My sister spent alot of time at mine but didn't live here. So sorry if this is a silly question but if they run my genome this will rule out any genetic neuropathy? There are alot that they probably haven't even identified yet so would this be 100% that not genetic. I have held off so far with the ivig trial as symptoms are not bad enough for treatment yet.probably will have to wait 6 months to see this guy and then another to get results 😔

All they can do is rule out the ones that they know of so far.

As my brilliant Immunologist says: "we use the tests we have, not the tests we need."

While there are some treatments for autoimmune conditions, many of them are just suppression of the immune system as a whole (chemotherapy) and not cures. They are, however, helpful for symptoms.

I have wide ranging PN and small fiber neuropathy, all traced back to my Immune Disorder. My immune system attacks my organs/systems, including my nerves.

The key here is that at this point I am NOT looking for a definitive diagnosis or a 'cure'. I am looking to alleviate my most difficult symptoms (pain, burning, stinging, and itching skin).

Keep posting and letting us know how you are doing.

Hugs, ElaineD

Thanks Elaine,
I guess what I'm trying to determine is if the damage is done, or progressive.... how to manage that vs if this is indeed an ongoing autoimmune process that might do well to be knocked down a bit and treated. There are some interesting stories of people with neuropathies that were a once time autoimmune flare that when caught early were able to be put into remission with immunosuppression.