Searching For an Autoimmune Cause
 

I posted this in the PN forum as well but I thought it might be better here since what I'm searching for is a root autoimmune cause. This is a bit long so I do apologize for that.

At 20 years old I had a very sudden onset of numbness and pain in my hands and arms. It started in my right arm and then in my left as well. I struggled to lift them to even brush my hair.

At the time, I was in college and the clinic first said it was probably a pinched nerve and then said it was possibly stress or anxiety (I know). At one point I was sent to the ER because I started to have chest pains (which the clinic tried to treat by having me breathe into a paper bag) and was told I had costochondritis, unrelated to my pain and numbness in my arms.

Eventually I was able to lift my arms again but I still had a lot of numbness and pain (I think I just got used to it honestly). I had been diagnosed with IBS two years previous to that and I was good at getting used to pain and problems with my body.

I went to a number of doctors; neurologists, endocrinologists, rheumatologists, you name it. The first diagnosis I got was Chiari and I had surgery for it, about a year after the onset of symptoms. However, after the recovery period, I was still experiencing the same symptoms and the neurosurgeon who had insisted Chiari was causing the problems said that maybe it hadn't been the cause after all.

Not long after that, I had an nerve conduction study and a punch biopsy and was diagnosed with Small Fiber Neuropathy. While searching for answers and after diagnosis, I had blood tests for a variety of different potential causes; lyme, crohns, lupus, thyroid problems, IBD, diabetes, B12, celiac, and probably a few I don't remember.

The only thing my blood work showed was a high level of C reactive protein, and some other non-specific inflammation markers (which have all been consistent in my blood work for the past four years), which my doctor told me meant something was causing inflammation in my body and that my SFN had an autoimmune cause but that they didn't know what it actually was.

Since then, I've been put on Duloxetine for pain management and I continue to experience quite a bit of numbness in my hands, and it has been becoming more frequent. I've also been having intense weakness again. I have had diagnoses of PCOS, chronic fatigue, and the continuing IBS. I also have Livedo Reticularis and Erythromelalgia, which has been flaring on my face a lot in the past few months. I also sometimes get what could be a butterfly rash? But I'm never sure if it's that or if it could be a different red rash on both of my cheeks.

I have had severe pain in my feet and legs as well but I usually attribute that to flat feet, however now I'm experiencing weakness and fatigue in my legs nearly every day. I am 26 now. In that time, I have also experienced (or am still experiencing really) severe back and neck pain, hair loss, weight gain, anemia and vitamin D deficiency. I know that not all of these things are related but frankly at this point I never know what might be related and what definitely isn't.

Has anyone experienced similar symptoms or does anyone have any idea what the root autoimmune cause might be? I know that it's very likely my SFN (and everything else) will remain idiopathic but I'm so tired of diagnoses of exclusion and I refuse to give up trying, especially as my symptoms may continue to deteriorate.

I also want to see another neurologist recently, 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, especially since they were only done on my arms.

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 won't have those results for another month, because of difficulties with appointment scheduling, and it's killing me. My previous ANA results from four years ago were 1:40, homogeneous and speckled, and I was told that was normal but I don't know if it's possible that things will have changed? Is it possible that something will show up this time if it was negative before?

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, given all of my symptoms, but the past ANA makes me think its not possible. I just want answers, I'm so tired.

TLDR; sudden onset SFN in hands and arms at 20, high level c reactive protein, blood work otherwise normal, Erythrolmelalgia/Livedo Reticularis/PCOS/IBS/Chronic fatigue/insomnia, looking for possible root autoimmune cause.

Recent Appointment 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.

All of the anti-nuclear antibody conditions--
 

--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.