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