I, too, have a very high positive ANA titer (1:640 - speckled pattern). Please check out my post on the health pages. Many fibro and/or CFS patients have a positive ANA titer and some autoimmunity issues:
http://www.medhelp.org/health_pages/Fibromyalgia/Diagnostic--Blooc-Tests-to-Help-Diagnose-Fibromyalgia/show/377?cid=39
i was partly diagnosed with connective tissue disorder -fasciitis, this has also been partly diagnosed as fibromylagia and i also have carpal tunnel syndrome (pains in both hands with swelling) i cant understand why my gp is only able to give partial diagnoses, has anyone else had problems getting a firm diagnosis, i am only really being treated with painkillers, i have tightening of my skin and pain in my muscles, i use crutches to get around is there a test i should ask my gp for to get a firm diagnosis? the docs also thaught i had raynauds disease but arnt clear about it and hace now decided its carpal tunnel. i had my colon removed and have an ileostomy due to severe bowel problems (again no firm diagnosis but suspected chrohns disease) i have problems with my liver and heart which i am told could all be connected somehow. is there anyone who is going through a similar condition as i feel so alone in this as i dont know anyone with similar.
Thanks - Yes, ANA has been elevated for 15 years.
12 years ago I was diagnosed w/ Fibromyalgia by an internist at Mayo and Possible Mild Lupus and Raynaud's by the Rhuematologist at Mayo. They could not agree.
Now, 15 years later, a different rhuematologist at Mayo says he doesn't think I have Raynaud's, no lupus and that he can't put any weight on the positive ANA since he and his collegue wrote a paper in the subject noting that 96.6% of the healthy population has a positive ANA. Everything I read has much lower %, more like 5-20%.
Anyway, he said I clearly have Fibromyalgia and did not do tests for any other autoimmune diseases. I have a lot of nuerological symptoms too that I don't think fit the "Fibro" profile. Probably time to get a second opinion. : )
Was the ANA repeated? If not, it should be. I think your first doctor was correct. It sounds like you may have fibro secondary to an autoimmune disorder. If the ANA is elevated then there is inflammation. There is no actual inflammation in true fibro. All lab testing comes back normal.
I too have high positive ANA, just saw Dr. Monday. He said I don't have enough symptoms to say I have Lupus. It could take years he said, to have all symptoms.
So, they just treat what I have with my fibromyalgia. I just started Lyrica Monday. The first night was rough, but after that I am doing fine and not really sleepy all the time like I heard. Good Luck! But if you feel he has missed something don't give up, you know your own body.
Lillie