I was diagnosed with Lupus in Oct. of 1997 after 2 years of going from doctor to doctor. In 1995, my legs started to burn and by the end of a few weeks they were so bad I could not stand up. I had been to the emergency room and told that they did not know what it was and that they did not "think" it was blood clots. I had some nights when I did not even know if I would wake up in the morning... ( because I knew that blood clots could travel and cause heart attacks and strokes.) I was seen by a Neurologist and told it could be Lupus or it could be Multiple Sclerosis (MS).... but really the doctor made me feel like he really did not believe me. He acted like he had never heard of burning pain. I had to educate myself, I was lonely and had no one to talk to. Along with the burning I experienced a wide variety of strange sensations, all of which seem to be invisible to the doctors.... and most were hard to explain. I also had chronic sinusitis and ear infections. I had a positive ANA, which the doctors told me was not important. I switched my Primary Care Physican (PCP), and even asked my Obstetrican for help. I saw a GI doctor and was told I had reflux disease. I went to 2 Rheumatologists and was told by both they did not think I had Lupus. One told me this without doing any blood work at all.... the next told me he thought my ANA was a mistake and that it would be negative and would prove it by retesting me. Well, it was positive and I asked for a copy of my lab results. The lab had suggested he run an anti-DNA test... all he needed to do was call the lab back... ( he decided not to do it... because he had already told me he did not feel I had Lupus)
I was seen by a Neurologist and told it could be Lupus or it could be Multiple Sclerosis (MS).... but really the doctor made me feel like he really did not believe me. He acted like he had never heard of burning pain. I had to educate myself, I was lonely and had no one to talk to. Along with the burning I experienced a wide variety of strange sensations, all of which seem to be invisible to the doctors.... and most were hard to explain. I also had chronic sinusitis and ear infections. I had a positive ANA, which the doctors told me was not important.
I switched my Primary Care Physican (PCP), and even asked my Obstetrican for help. I saw a GI doctor and was told I had reflux disease. I went to 2 Rheumatologists and was told by both they did not think I had Lupus. One told me this without doing any blood work at all.... the next told me he thought my ANA was a mistake and that it would be negative and would prove it by retesting me. Well, it was positive and I asked for a copy of my lab results. The lab had suggested he run an anti-DNA test... all he needed to do was call the lab back... ( he decided not to do it... because he had already told me he did not feel I had Lupus)
I felt lost and alone... my husband of 14 years chose to listen to the doctors instead of me and whenever I talked about my health, we would fight. He brought home articles on stress and anxiety... You know when things like this happen you really need to talk to someone.... I decided to try to keep it all inside of me... so I suffered in silence as well as I could... My Internist seemed to laugh at me... I tried to explain strange things to him... he always had a smirky smile on his face and told me he could do nothing but psycholgical testing and stress conceling. Later, when I got my records, I saw where he put in the records that "Patient feels she has Lupus"... as if he were mocking me. He never once ran any blood work to check for Lupus and I was even denied tests that I had asked for. I finally asked to see my 3rd Rheumitologist... I gave it to God... I really released it all to Him.(There was a month before I saw this doc and I really felt peace about it all...) when I saw her she said she would always run more tests on someone with a positive ANA... I had ANA, anti-DNA , and anti-phospholipid... she called me at home and told me.... and has been very caring and helpful... quite a switch from the doctors I had seen the previous two years!!
Thank You for your work in trying to bring Lupus out and to help educate people.... It is very surprising that so many physicians seem to not know even the basics of this disease. It seems to be the last thing they think of... maybe if a women or man has unexplained medical problems they should be taught to test and then re-test...( since it can be positive and neg. for unknown reasons...) instead of dening there is a problem... Marcia ~
Gayla, thank you....Hopefully through your site and others, people will begin to understand Lupus.
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