Hi Pammy,
I have just read this post and the other one in answer to someone else's. I'm so sorry you're feeling as you are now and can really understand your frustration.
Like you I felt ill for years and was brushed off by my doctors. I then was lucky enough to go into remission for two years and even ended up convincing myself that I had imagined the whole thing or somehow made myself ill. Then, it all started coming back, only this time it just got worse and worse. I kept going back to my GP who is a good man and who doesn't ignore me and he kept testing ANA and all sorts of other things like lymes, mono etc. Nothing came back positive. According to my bloods I was a perfectly healthy person. Of course the problem was that as a perfectly healthy person I was finding it incrreasingly difficult to work, walk, or move in any way.
I had to keep looking back to who I knew I was. I used to ride 6 or 7 horses a day, I loved walking and am black belt in aikido. So, I don't think I'm a lazy slob but that was kind of the impression some docs gave me. My GP referred me to a rheumy (well actually he said you can go and see a rheumy if you want) and at first she couldn't piece things together at all. She took me seriously enough but she's pretty young and absolutely wanted my bloods to show something more than highish CPK and a slightly raised sed rate.
At first I felt totally abandoned and didn't even go to see her for 6 months. Then as things got even worse, I went back and she said "Oh I haven't seen you for a long time" (she was actually surprised). Anyway, I kept complaining and mentioned dry eyes and mouth. What with that and the photos I had kept of the one time I got a really severe malar rash, she sent me to a dermy to test for sjorgens.
Annoying little being that I am, I also took the photo to the dermy who, although a stand in for the normal dermy and looked like she'd just left school, got all excited about that and decided to test for lupus too. She took a small punch biopsy from an unaffected part of non exposed skin (on my stomach).
In the meantime the rheumy had said that if we didn't get any results back from the latest batch of bloods then she would try treating me as if I had fibro to see if that would help. Of course, I knew I didn't have fibro and so did she.
Then, suddenly one day, I have the rheumy on the phone, almost in a panic, saying don't start any fibro meds you're skin biopsy came back strongly positive for lupus and you must start plaquenil right away.
So, it was a long road but I did get there. Since then all my docs have been wonderful and my rheumy has possibly learnt to be a little less reliant on bloods
My bloods still have never come back ANA positive. My lymphocytes and leucocytes are often out of whack. My vitamin D requires constant extra vitamin boosts to keep it anywhere near normal. I have had very high anticardiolipin antibodies and tend to have very high C3d (whatever that is) and C1q but that's it (I think, me memory not that good for these things)!!
yikes, are you still awake :lol: ?
What I meant to say was. You know your body and you just have to keep going back until you get answers. Maia's idea of getting a referral to a dermy is a good idea.
Katharine