Hello! Newbie here, looking for pals who "get it"
Hi, my name is Whitney and I was diagnosed with Lupus and APS last Friday. Though I'm newly diagnosed, I have been "sick" for 4 years. I was diagnosed with fibromyalgia and ankylosing spondylitis in 07 and was put on Enbrel two years later to treat the AS. Five months after the first Enbrel shot I started having neurological symptoms. I couldn't feel my face, double vision, bad vertigo, nausea etc.. Well, it turns out I had developed demyelinating lesions on my brain as one of the side effects of Enbrel. In my heart I knew that AS and Fibro were NOT the main issues here. There was something else wrong with me. My neurologist was so baffled at what Enbrel had caused that he brushed me off and said that I should just try to be seen at Mayo Clinic in Rochester, MN. My family and I agreed and within 8 weeks I was at Mayo. They told me that the lesions were going to be there for good, but my neuro symptoms should remain gone (80% chance) While I was at Mayo I told them about all the symptoms that I'd been having since 06 and I stayed a week. I left with a Fibro diagnosis and some open ended questions that they said I would need to look into when I returned home. (Don't get me wrong.. they left no stone unturned and they were absolutely fabulous)
I had always tested negative for Lupus, but the test they ran was borderline positive. This didn't alarm me, I really didn't think I had Lupus. Also I had abnormal IgG IgM.
I was so tired of doctors when I returned home that I just did my PT, saw my general practitioner, and hoped for the best. I got better, even got a job.. then I got sicker again. (UGH the dreaded cycle of sick!)
I broke down and went to a rheumy b/c I couldn't go through what I thought was another Fibromyalgia flare again without seeing a specialist. I heard about the rheumy from a client in the hair salon I was working at. She stopped me one day outside, grabbed my arm, and said, "Honey, you have Lupus!"
She insisted that I see her doc because my skin was so red from only 5 minutes of being outside. I saw him, blood tested positive now, and ta-da I HAVE LUPUS.
(I could almost feel him hand me the 12 spoons from "The Spoon Theory" as he told me the diagnosis!!)
After 4 1/2 years I finally know what is REALLY wrong with me. My husband and I were thrilled. Of course the rest of the world wouldn't understand that.. but those who have been through what most of us have been through understand completely.
So now, I'm determined to stay positive and take care of myself. (as I type this at 3am.. hey.. I don't work.. my time is all messed up!)
I need friends that understand and I cannot wait to make some real connections here!