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Hi everyone.

Over a year ago, I was diagnosed with an autoimmune-related skin condition. After finding out that people with this skin disorder are likely to have a systemic autoimmune disease, I began doing research on autoimmune disorders. I was disconcerted when I found that I actually had MANY of the ACR criteria for lupus (malar rash, photosensitivity, joint pain) as well as many other common symptoms (extreme fatigue, "mind fog", headaches, swollen lymph nodes, low fever, and hair loss). Hence, I asked my doctor to do the proper blood work. Though she told me I didn't need it, she did it anyway. My ANA came back as 1:320 in the speckled pattern, as well as a low hematocrit.

A few weeks later, I went to a teaching hospital in Boston, whose lupus clinic was recommended to me. There, I saw a medical fellow who examined me and was under the supervision of one of the hospital's top lupus doctors.

I made a list of all of my symptoms, as well as my previous lab work. Oddly enough, I thought that the blood work in combination with all my symptoms would leave no doubt that I had lupus or another autoimmune disorder. Though I filled out a questionnaire about my symptoms in the waiting room, my doctor never once opened it. Instead, he asked me general questions. They didn't fully cover my symptoms. So, I had to keep interrupting him and letting him know about things he was missing. Even then, he only heard about the symptoms that were the worst and not the complete list.

He did an examination that consisted of checking my joints and lymphnodes for swelling. [Of course, there were none, but I know that when I have these "waves" of feeling very poorly, both mentally and physically, that my joints get much more painful and my lymphnodes do swell up.]

Afterwards, he went out and talked to the doctor supervising him. They both came in and she said, "Well there's nothing from your examination that would indicate that you have lupus. It sounds to me like you're one of the 5% of the population who is healthy who just has a positive ANA."

So, I asked this supervising doctor about possible explanations for my symptoms if I don't have lupus. She said that all of my primary symptoms can be explained away, for instance, the malar rash can maybe be explained by rosacea and the fatigue a result of poor sleep quality. They then said they would redo my ANA, but that it wasn't likely that there was anything wrong with me.

A few days ago, I got a phone call from the medical fellow saying my ANA came back as 1:40 speckled pattern. He said that since this is only weakly positive, it confirms their suspicions that there is nothing wrong with me, but that if I'm still concerned about this in a year then I should come back.

I had done quite a bit of research before this appointment and was pretty sure I knew what to expect. However, so many aspects of it blew my mind. Should I take this doctor's word for it that there is nothing wrong with me? I am still tremendously confused as to why the supervising would say that it appears as though I'm just part of the 5% of the population who has a positive ANA when there is no problem, when the entire reason I had the blood work done was because I had so many symptoms. I was actually quite happy to find a disorder that described so much of what I was feeling, because it meant that there were treatment options I could try.

Where do I go from here? Should I try to find another rheumatologist? Did I do something wrong at my first rheumatology appointment? Why was this doctor who is supposedly very good so dismissive about my symptoms? Should I really wait a year to have these symptoms considered again??





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