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Can anyone help?
Jun 3, 2008
7 years ago I was diagnosed with Grave's disease and within the year had to have my thyroid completely removed. About one year after that I was diagnosed with the eye disease that goes along with Graves which ran it's course and I guess is as bad as it's going to get. I've been diagnosed with Miagranes, acid reflux and vertigo since then without being tested of course. Recently I broke out in this really bad rash that wouldn't go away and was sent to a derm for biopsy. I got the results last week saying that it's Lupus. I really didn't know anything about Lupus and went on line to see what it meant. When I read the list of symptoms I couldn't believe it. The acid reflux that I had been diagnosed with was from chest pain when I breathe in so bad sometimes that I think I'm having a hard attack. I haven't felt "right" in a long time and when I told my endocrinologist all of the systems that I was having he told me that maybe I needed to see a pschyc. I've been made to feel like I have something mentally wrong with me. I'm tired and in pain all of the time. I've always been the kind of person who ignores things hoping that they'll go away but I just knew that something was really wrong. Today I went to the derm and he said that the blood tests were negative so I 100% do not have systemic Lupus that I "only" have the skin Lupus which isn't really a big deal, (okay not to him) but my question is I have so many of the symptoms of systemic Lupus are the blood tests 100% conclusive? He wouldn't refer me to a specialist, should I demand it? When I told him about the chest pains, the joint pains, the nose and mouth ulcers that I seem to keep, once going 6 months with a fever, he told me that I couldn't just lump every symptom that I have under Lupus. Any advice?
VeeJ, Thank you so much, you don't know how much better it makes me feel to hear this. I have read the criteria that you're talking about but the derm and my family doctor both have now told me that the bloodwork IS the be-all-and-end-all for diagnosing Lupus. When I told the derm what I had read on the net he told me to stop looking for answers on the net because it would only "scare" me and that I couldn't blame every symptom that I have on Lupus.
I almost get the impresion that some doctors think that Lupus isn't real and for a disease that's been diagnosed since, I believe I read the 1920's that's just crazy. I have the chest pains, now the rash, the nose and mouth ulcers, fatigue and joint pain that has been documented in my files and now a biopsy says Lupus but I'm not suppose to believe that the other symptoms that are clearly named in the ACR criteria for diagnosing Lupus. I just don't understand that.
I see my family doctor again today for a consulation that I set up and I'm going to try to discuss this with him once more and if he doesn't refer me to a rhuematoidologist then I'll just find a doctor who will.
I went to the National Lupus Foundation website in my area and asked for them to send me a list of doctors in my area. How do you know if they're affiliated with a teaching school?
Again thank you so much it does make me feel so much better and a little less crazy to know that I'm not alone.

I just still don't get my doctor's refusal to acknowledge this disease.

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