Since I was 17, I have some underlying problem that has waxed and wane over the years including joint, muscle and neuropathic pains, fatigue. Now 45, my symptoms are increasing and worsening. At 17 and during my 20's, I had an ANA 1:640 speckled pattern and was positive for Anti-histones on several occasions, but never had any other postive subsets for the various autoimmune diseases. When I was 26, they wanted to rule out scleraderma because my sister had CREST syndrome and therefore I had a skin biopsy. The biopsy showed increased collagen consistent with lupus, scleraderma and others, but it was nonspecific. A specialist did a nailfold capillary microscopy and concluded that I didn't have scleraderma, but wondered about Sjogren's, although I was negative for those antibodies. I do have dry mouth and eyes and frequent costipation now. Over the years, I have been getting more and more neurological involvement during my flare-ups and the pain has become unbearable. At 43, I saw a rheumatologist who did a complete work-up and my result were normal including, to my surprise, my ANA. He sent me to a neurologist who gave me a skin biopsy that revealed idiopathic small fiber neuropathy. It is diffuse and doesn't spare any part of me. I am simply being treated symptomatically. I am concerned because I know it is progressively getting worse and nothing is being done to find or treat the cause. I suspect that all along, I have had some undiagnosed autoimmune disease. Anyone have an opinion or advice?

Welcome CoachT.

Are you saying that you might have diffuse systemic scleroderma? Just curious.

No, I don't believe I do, although my sister does. I saw Dr. Legerton at the University of South Carolina in '96. He said I had a normal nailfold capillary microscopy. That, along with my lack of a typical history, findings on the physical exam and my speckled ANA lead him away from that diagnosis. However, he did believe there was some autoimmune process going on.

Thanks very much for your reply. I hope everything turns out fine for you and for your sister. A good doctor who knows this disease is important. It sounds like you have one. Take care.

My mom had CREST. I have neurological issues that are idiopathic, but with my family history an autoimmune cause is suspected. I had low positive results in my early 30's for ANA & antiphospholipid antibodies, now those are negative. My point is, trying to diagnose autoimmune disease through bloodwork alone is often a long and frustrating process. Maybe work with a rheumatologist who looks at the big picture, not just labwork. Have you had an EMG/NCS to look at long nerve fibers?

As you know, Scleroderma is an autoimmune disease. Body attacking itself. Interesting subject.

I have had an EMG and it is mostly fine although there is some evidence of having had damage to a compressed nerve at C5/C6. I had a pretty bad compression fracture of C5 playing high school football and had to wear a halo. Now I have a reverse curve of my neck. Virtually my entire spine is arthritic from the Cs to the Ls. I just had a epidural injection from sciatica and I will have surgery this Summer to remove C5, replace it with a cadaver's fibula and then fuse it with C4 and 6. Who knows what role all that might play with my "Pain Syndrome"?

Iam sorry for your diagnosis and what your body is doing to itself. I was diagnosed with an autoimmune disease, Sarcoidosis which has granulomas forming in my body and anything enters my body I get sick as it attacks it thinking its an infection I got real sick with sepsis once the thing is there wasn't an infection just my body thinking there was one after an iv was placed in, my body thought that needle was the infection. These autoimmune disease are horrible and doctors don't know what causes them. I wish you the best and to feel better and again sorry.

Samantha

Coach,
Sorry about your condition, it is very frustrating to look for proper diagnosis.

You mentioned bulging discs at C level and at L level as well ,I think. I can see how this could cause some neuropathy. I have bulging C 6 - 7, and it has contributed to radiculopathy with pins and needles numbness and weakness in left arm.

You mentioned arthritis. Is it OA of the spine you have?
That in itself can be very painful. And with bulging discs and nerve compression from this both at C level and L level, I can imagine you must have a lot of pain. And when you add on SFN, OHHH then there must be pain.

Do you have the SFN as a burning pain all over? ---I do.

I have both OA and RA, and my rheumatologist said my SFN has come from that. I also have vasculitis, so that could be a cause.

Are you taking any meds for pain? A lot of pain meds has side effects as dry mouth, dry eyes, constipation etc.
Sometimes the doctor orders Antiseizure med like Lyrica to treat the nerve pain from neuropathy. Antidepressant is also used in combination to above. But you might already know this.

I wish you all the best for the spinal surgery.

Synnove

Sammantha.
I read you have sarcoidosis. I was also tested for that some months ago, but blood tests so far was negative.

Do you have skin involvement? If so, how is it?

Do you have lung involvement? If so, how is it? Do you get tightness like a cramp squeezing your chest? Do you have shortness of breath?

How did you get diagnosed? Did you have MRI of chest?

All the best.

Synnove