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Here is a story my new derm gave me about someone who may of gotten Lupus from Accutane.

"My face has broken out before -- horrible big lumps, which have been treated with Accutane. I never had the first scar though until much later. When I came to Europe, my face really broke out bad, but the sores were different -- very circular and they took forever to heal. I also noticed a brownish skin pigmentation forming on my forehead. I went back on Accutane, my sores cleared up, but what's left looks horrible -- blotches and scars (not pock marks, thank goodness, just discoloration).

About the time these new pains and skin problems started, my jaw locked. When it was locked, it would open about an inch, which was just enough to talk and eat small bites. I could unlock it by pushing my jaw to the side, but it just locked up again. Reluctantly, as I am really sick of doctors, made an appointment to see a maxillofacial specialist when I went back to the U.S. He was very nice, but was asking me many questions about symptoms and how I rated the jaw pain, etc. I told him my jaw didn't hurt much, but was more of a nuissance, and that all my other pains were worse. Before I saw him, I had just come back from Florida, where even though I used sun block (which I never do as I usually tan) I got really burned. I still had the sores on my face, but it all looked worse. I was really self-conscious about my face. He asked if I had ever been tested for any autoimmune diseases such as lupus. I was dumbstruck. My dad's second wife has lupus really bad, and I had never even thought that I might have it. Yet, when he said "lupus", everything seemed to fall into place -- especially the joint pain, rashes, and skin leisons.

The thought of wrapping all my problems into one disease seemed both scarey and relieving. Right now, a lot of people just think this is a result of stress or that I'm a hypochondriac. I find that extremely demeaning and frustrating. I'd rather tackle something with a name than all these separate things. Also, after all my problems, I stopped telling anyone about new things like the joint pain in my hips, shoulders, and knees, because I didn't want to sound like a hypochondriac. When I started getting tested for lupus, certain family members made statements to the effect that I had never complained about these symptoms until I started researching lupus -- which makes me feel accused of just making them up. As I said, the truth is, I had the problems but just didn't tell anyone.

I really didn't expect the first tests to prove anything, as I've gotten so used to doctors (like the recent orthopedists) saying they don't know why I hurt. To my surprise, my ANA was positive. I was scared. I went back to the States to try to get to the bottom of this. I figured the U.S. would have more and better research. The first doctor said it wasn't enough for a lupus diagnosis -- so did the second and third. I couldn't believe it. I just have so many of the symptoms. I was beginning to feel a lot better though, so I got angry, frustrated, and then I tried to get over it -- saying if there was something wrong with me, the doctors would find it. Now it seems I have even less support than before, as family members think this must be all in my head since the doctors haven't given me a diagnosis. They won't even read about Lupus to realize that it takes most patients many years to get a diagnosis, or to see that what I am going through is very common among lupus patients.

The way I've been treated by the many physicians has been the worst. Like you said -- I am a woman, and therefore considered emotionally-fragile and easily-affected. It is so condescending to be told, "You're fine, stop worrying." One doctor went so far as to say that all my symptoms are the result of too much emotional stress!

When I got back to Europe, a red, sunburn-looking rash started on my cheekbones and nose. I hesitiate to say "butterfly" rash, because that sounds like I want a lupus diagnosis. That's the other thing -- going through all the tests and doctor's visits, and everything being "inconclusive", I heard myself sounding as if I was disappointed. Well, I was... not because I want a potentially life threatening disease, but because if I do have it, which I actually think I do, I want to get proper treatment and get on my with life. If I didn't have all these sypmtoms, I would feel differently. Yet, people really think you must be a hypochondriac if you sound disappointed about inconlusive lab results. I mean if someone had all the symptoms of cancer, they would certainly want to know "for sure" so they could start getting treatments! This is all so frustrating.

I saw my dermatologist here in Europe, and she is concerned about the facial rash, so I am having a biopsy this week. I emailed my doctor in NY. He was the lst doctor I saw, and I liked him the best. He said he'd be happy to see my results. Who knows what will happen from here.

When I first got back from the U.S. this last time, I threw out all my lupus info, and vowed to clear my mind of it. Now, the chapter could be opened again. This time, I'm not going to tell anyone about any of my testing or doctor visits unless the time comes that I receive a definite diagnosis and treatment.

That's my story right now. I'm really tired of it all. I either want to be better or have a diagnosis and get treated. Thanks for letting me vent. Your story and symptoms are way worse than mine, but I can relate to a lot of the other stuff you've been through. I would like to one day be able to help others who are going through this experience the way you are doing with this web site."


from Gina ~ Europe ~





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