They checked my levels when I was first diagnosed and everything came back normal.


I want to see another neurologist today, in the country I'm now living in (so they don't have access to my old records), who ordered some more tests, including a new EMG and NCS, since she says that the intense weakness I've been experiencing is not characteristic of SFN. I had those done when I was first diagnosed, along with the punch biopsy that diagnosed me, but she seems to think they should be done again.

She also ordered a bunch of blood tests, including ones for Lupus, Rheumatoid, and thyroid function, and as messed up as it is I really hope something shows up. I just need an answer. She wants to refer me to a Rheumatologist either way though, since all of my symptoms indicate that SFN is itself just a symptom.

Questions, elevated levels of CRP report on there being one or more sites of inflammation in your body which may or may not have an autoimmune involvement.

Getting your new neurologist to refer you to a rheumatologist to check out possible autoimmune involvement like SLE and rheumatoid arthritis is a good idea.

Yeah, I've looked at some of my older records and I had a lot of other indicators of inflammation as well and with my range of symptoms now it's pretty clear it is something autoimmune. My new neurologist seems to heavily be leaning toward suspecting SLE (though she didn't say it directly her questions and what tests she ordered made it pretty clear) and I honestly have been thinking that too. But even if everything comes back normal (which I am PRAYING it will not), I'm still going to go to the rheumatologist, because there is definitely something else going on.

Most Recent Results
 

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. Unfortunately that appointment isn't for ANOTHER two months so I continue to be stuck in limbo indefinitely.