My name is Rob, I am 41, and was diagnosed with SLE five years ago. Having read your story, I find there are many parallels to my own story. I had been dealing with all sorts of seemingly unrelated symptoms, some of them for years. One day, I noticed two patches of hair fall out on the back of my head. My barber called it Alopecia Arreata. I had welts under and on my arms, opressive fatigue, cognitive problems, photosensitivity, mouth sores, joint pain, I would literally feel like I had the worst case of the Flu just from being in the sun for 30 minutes.
I got online, looked up the Alopecia, saw the word Lupus, and the light bulb finally lit up. Like you, I also have a family history of Lupus, my 72 year old mother was diagnosed back in 1990. After going through a bunch of very unsympathetic and frankly incompetent rheumotologists, I finally saw one who was able to put together the pieces of the puzzle. I was diagnosed with SLE. I am on full disability, and live in a virtually constant state of flare that can be a real rollercoaster to deal with.
I too, knew that there was something seriously wrong with me. I knew it in my heart. Normal people don't miss a week of work for having been in the sun for half an hour. Normal people don't have trouble remembering simple words and tasks. Now, I'm not qualified to diagnose anyone, but it sure sounds like you have Lupus, and it sounds like you already meet the diagnotic criteria. Add to that your family history. Have you considered getting a new Rheumotologist? Good ones are few and far between, but often times that's the only way to get an answer. I guess it didn't occur to you rheumo that you are convinced you have Lupus because you may indeed, have Lupus. They are the (so called) experts, but these are OUR BODIES, we have to live in them every day, and we KNOW when there is something wrong. Trust yourself, trust what your body is telling you, and get a second, even a third opinion. None of us wants this lousy disease, I do not want you to have Lupus, but something is wrong and you need an answer so you can treat whatever it is that's causing all of your very real symptoms.
Welcome to our group. Please make yourself at home here. You'll find loads of good info, support, and understanding.