I don't understand why they are afraid to say yes, you do have Raynaud's. They resort to saying that I probably do. The problem with Raynaud's is that there's no definitive test to diagnose it. It's a process of exclusion of other potential illnesses. I have had negative tests such as ANA, sedimentation rate, rheumatoid factor, thyroid hormone and cbc tests. The only blood test that came back abnormal is my vitamin d levels, which I was told is low. It's called rickets, and is an indicator of Lupus or MS, and a few other illnesses such as cancer. That's a clear indicator of autoimmune problems.
As far as my discolored and rashy legs go, they have no answer for it and seem disinterested in investigating it. I've been going by what I read and seeing pictures to get an idea what could be happening. So far, all my new symptoms always seem to have a correlation with an AI disease.
My pulmonologist told me my blood oxygen is at 100%. as of yet nothing has indicated abnormal blood function. My Rheumatologist came out and said negative tests can be actually false and that I probably do have Lupus or a similar disease that causes inflammation. They seem to think Fibromyalgia is the best thing they can diagnose right now, but it doesn't seem to fit all my symptoms and their severity.
It seems they are scared to treat me with medicine as none of my test as positive. I think they're afraid to put me on medicine although they know I have an autoimmune disease. I feel it may be due to the fact they are scared of being sued if I get hurt or die on an anti-inflammatory. It's more likely to do harm not to treat me and I feel like saying that at my next visit. I'm getting run down so bad, I hallucinate constantly, I feel confused, dizzy, my joints are swollen, I'm extremely nauseated every day, my hair is starting to fall out a little, my chest hurts a lot when I breathe and feels tight, I have a hard time urinating, nerve pain and numbness, seizure like symptoms, my skin looks awful and I have a bad fungus infection/granuloma in my lung due to an AI disease. I feel like I am slowly dying. I've never felt this way in my life. I have never felt so sick and disabled as I do at this time.
I just don't know what to do or where else to go. My family isn't supporting me during this time, they think I'm crazy and being a hypochondriac even though people have commented on my malar rash and color changing fingers, and my doctors know something is wrong but are unsure and afraid to treat me. This is real and it's dangerous. I've already been to the ER, and I'm afraid I'll be there again soon enough.
My Rheumy comes from a reputable hospital and university called Rush in Chicago, IL. It's rated as being one of the best hospitals in the country. I have a hard time understanding where this reportedly high ranking professional health care fits into my experience with them. What do I do now? I feel that I have no better clinic or hospital to choose from to find a good Rheumy.
Sorry for the long post, but I am desperate for help.
Post Edited (pink blobs) : 3/29/2011 1:38:01 AM (GMT-6)