Welcome to the forum. My name is Kathy and I have SLE Lupus and I will be 50 in December. Your history with the sorry excuses for doctors reads a lot like mine big time. I got diagnosed at the age of 36 and should have been diagnosed many many years before then. I went from doctor to doctor to doctor to continuously be told that I was worrying and stressing needlessly. It was awful and shoot the Lupus very nearly killed me by the time that I got diagnosed as it started affecting my heart muscle and lungs. It was so bad that I had had enough of the doctors not listening to me that I made an appointment with a doctor right out of medschool who was looking for clientel for his new practice. I made me an appointment and I went in to see him. I told him that since I was there to see him for a service and that I was paying him for his services that that meant that I was his boss and that if he could not and would not listen to me and run every damned test that he could think of for Lupus that I would consider him as wasting my time and I would leave and he would not get paid period. My symptoms were: the malar rash, swollen and very red finger joints, swollen very red knees that hurt so bad I thought I was going to go crazy, seriously shortness of breath, bald spots all over my head, sores all in my mouth and nose and ears, my heart was not beating normally and oh it was horrible. He told me right out that when he was a nurse that he worked with Lupus patients and that he would bet his house that I had Lupus and he ordered a bunch of labs to test for that and Thyroid problems. All of the tests for Lupus came back positive and the Thyroid tests were all normal. He literally called me at my house and told me to come on in and he told me that I do have Lupus and that he was sending me to a Rheumatologist with in 3 days. The Rheumatologist told me that I had the most classic case of Lupus he had seen in years and that he believed that I have had it since the age of 5 years old. You see I very well understand how horrible the medical community can be to people, but when you threaten to not pay them, they tend to listen lol more carefully. There are a lot of folks in here that have suffered through the same crap and some are still waiting for answers sadly to say.
I am wondering too from the symptoms that you describe if you have been tested for Pernicious Anemia and Sjogrens Syndrome. I mean it sounds like you have some Neuropathy going on with it all too and the memory loss. You also state that you also have the weakness and the fatigue. These all sound like it could be PA. I also think that you should be looked at very closely for Lupus due to the Malar rash and the other symptoms. I am wondering if you have a problem with sores in the corners of your mouth and problems with your tongue, like a red smooth spot in the middle of your tongue with pain. This could indicate Pernicious Anemia too and they should do a test to see if you are Vitamin B12 deficient.
I think you have to really assert yourself to the doctors the way that I did as you know there is something odviously not right and you know your body much better then they do. Also there is such a thing as being sero-negative Lupus. I hope that you can get some answers hon.
There are a lot of good people that come in here and they will probably have some good answers to help you too. Please keep posting as I care very much about you and what you are going through.
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.