At a loss, autoimmune something?

[Dnmh]

Posted this in the Autoimmune Community too. Copy/pasted here.
I was dx'd with morphea scleroderma back in 1982, have had the "lesion" since @ 1974ish. I also have just recently been dx'd with small fiber neuropathy - possibly autoimmune related. I have the fatigue, muscle weakness, on and off tummy problems, etc. Don't have fibro. I have a positive ANA titer of 1.7, but none of the patterns are positive. I have no insurance, but can get in to a doc if medically neccessary so I'm trying to do some homework and figure out where to have my primary refer me next. I have some photos of my different skin issues and discolorations:
http://www.medhelp.org/user_photos/list/623944
I'm hoping someone here may have something similar and can give me some clues? I noticed a slight redness to my cheeks, so started thinking Lupus rash, but also found a link on sarcoidosis, and the little rashes I get on my torso leave behind a brownish patch....
Recent CT says that I have multiple emphysematous blebs in  the lung aspices (yes I smoke, but am wondering if sarcoid related?), and a newly discovered "cyst" on my liver. They also, about 2 yrs ago found some "old scar tissue" in my rt lung on a CT - they had me scared it was lung cancer at the time. I get a pressure/pain in my right side, under/behind ribs. Ruled out gall-bladder, kidney, ulcer. I have a solid nodule and some small cysts on my thyroid, but all tests, including antibodies are normal.

Anyone? This has been going on since at least 2002 - the searching for a dx. Symptoms started way before that. I'm reaching a desperation point.

Thanks in advance!

[Dnmh]

This last round of appointments started Sept 08. All at Cleveland Clinic, which I love by the way! Went to my primary because my BP was running extra low 80s over 50s and was very fatigued, had no appetite. He refered me to endo and neuro. Thought I had POTS. I don't. SFN is damage to the sensory nerves. For me it involves my feet and legs, as well as hands and forearms, and possibly other autonomic functions. Neuro ran sweat test, punch biopsies, EMG, tilt table and a bunch of labs and I'm almost positive one was for EBV. He was rather thorough. The sweat test and biopsies are what determined the SFN. His dx is "SFN, caused by possible unknown autoimmune process" All labs were normal except for elevated ANA, MPV and Monocytes.

I understand a lot about the ANA and the patterns, and realize that a pattern may not show up for years. I started looking for answers 2002. At the time, my ANA was negative. It didn't show positive until 2005 and has remained positive since.

I can get finacial aid through Cleve Clinic, but it has to be medically neccessary. That's why I'm posting photos instead of going to a dermatologist. That's $500.00 I don't have available to spend. If I can point my primary in a direction, he can find a way to make it medically neccessary - he's that fantastic! He knows that whatever is wrong with me is out of his league and will refer to specialists, but needs a direction.

Thanks again!

[mercygracious]

Have you tested positive for Epstein Barr virus or do you know?  If not you may want to test for that as well...don't know if that will shed any more light onto this subject or not but it is worth a try at the very least you will know if you have it or not!  Also, what is small fiber neuropathy and how did they come to that dx for you?  That could be some of what I have ....not sure....I have not really heard anything about it.  Have you considered going to the Cleveland Clinic or Johns Hopkins or something....I'm not going to suggest Mayo Clinic....I went there and was extremely disappointed!!

[Dnmh]

Yes, a few. Also under my belt are Scleroderma Specialist (he Undiagnosed me), neurologist, endocrinologist, pulmonary specialist and gastro.

That's why I'm frustrated.

But thanks.

[mercygracious]

Hello,  Have you tried a Rheumatologist?  That would probably be a good start!

[Dnmh]

Anyone?