Almost all of the tests (EMG/NCS/F-Wave upper and lower, FANA, RF, SS-A & SS-B, ds-DNA, CK, Paraneoplastic Antibody, T4, TSH) came back normal, ruling out basically everything my neurologist thought it could be but my symptoms are getting worse.

I wake up with numb hands, and sometimes they get numb during the day, my erythromelalgia is flaring on my face all the time, I struggle to hold up a book when reading to my students and have to constantly switch arms, have difficulty keeping my arm up when writing on the board, am exhausted constantly but can't sleep, and have pain and fatigue in my calves constantly. I'm just so tired and feel so terrible and all I want is answers but every possibility keeps being ruled out.

The only abnormalities were a positive ANCA (it says C-Type 1:80, though I don't know what that means), slightly elevated T3, and slightly low Lupus Anticoagulant Screening.

My neurologist told me that the positive ANCA could be a false positive but if it isn't then it could be indicative of mixed connective tissue disease. I tried looking it up online but all I found was a possibility of vasculitis, not mixed connective tissue disease, so I'm a little confused.

She also basically told me that if it's a false positive then I may never have answers, that she has no idea. But she is referring me to a rheumatologist who may order more tests including the tests to see if the ANCA is a false positive.

--of which ANCA antibody presence is considered a part (and yes, it is most often associated with small vessel vasculitis, but can be present sometimes in other related conditions as well) can be associated with neuropathy, both in that there can be a direct attack on the nerves OR that the blood vessels supplying them can be compromised.

Take a look at:

Immune Neuropathies: Axonal

OP: Often we never find out WHY....there is so much info here and why not just start working with some supplements many talk about here, including me.

You might get some help by taking Grape Seed Extract -- do a search on Grape Seed Extract and autoimmune and see what comes up.

I just bought my neighbor a supply of Grape Seed Extract as she deals with RA and can't afford the supplement so I'm helping her, I hope.

With Grape Seed Extract one cannot take it if they take pharma blood thinners....

Do you take supplements now?

I appreciate your thoughts but I am not looking for advice on supplements or diet.

It's been 7 years. I know that some people never find answers but the way I look at it is if I give up then I definitely never will.