I have been tested and it was negative.

I recently also became aware that I have Erythromelalgia, which shows up in my face and upper arms. I think it must be somewhat related, perhaps with the same root cause as my SFN, as that had an unusual presentation as well, in my hands and arms rather than lower body.

Questions, this information about erythromelalgia may help you.

Erythromelalgia - NORD (National Organization for Rare Disorders)

Thank you for the link, the information is very helpful.

I also have Livedo Reticularis, and combined with the Erythromelalgia I guess whatever underlying autoimmune issue I have has to be neurovascular, which maybe narrows it down a bit but I don't know.

I've also been experiencing higher heart rates lately, even when resting (low 100s), and pretty bad insomnia.

It's been a few years since I had tests so I'm currently trying to go to the doctor and at least get a few blood tests done, confirm rule outs at least. But I currently live in a country where I do not speak the language so I'm trying to figure as much out by myself as I can.

Restorative Sleep is vital to healing and you say you have insomnia. Do you live in a country where homeopathics are used. They are used worldwide and there are a number used for insomnia....Do a search...

Hi,

This sounds so much like B12 deficiency. We have the same symptoms. I have developed SFN almost 3 weeks ago and now it is spreading everywhere. I am starting to get b12 shots tomorrow. Have you checked your levels?

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.

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.