First, let me say that I am so glad I found this support group! I am a 29 yr old mother of 2 young boys and I was diagnosed with Lupus SLE in August of 2006. For the last 2 yrs I have been having problems with fatigue, headaches and no energy. I didn't really go to the doc for fear he would say "Your lazy!" In July of 2006 I started having real bad shooting pains in my bones and joints. I finally went to the doctor and after a few tests and referrals, I found what I thought was a good rheumy. He did blood work and a urine sample. he said my ANA was 1:80 and it was positive and my ENA panel was also positive. He also indicated that I had blood in my urine. To keep this as short as possible, since that time I have seen a Kidney specialist that wasn't convinced I had Lupus at all and said I did not have Lupus Kidney (even antibiotics have not cleared the blood from my urine and it is still there). In December 2006 I had an "episode" at work and was sent to the emergency room, they referred me to a Nuerologist and stated that I had a seizure. the Nuerologist says he thinks I had a TIA. I have also become hypertensive and have severe heart palpations. I am so fatigued I can hardley stand it. I have developed ulcers on the sides of my tounge. I feel hopeless. Like I can deal with this anymore. I can't think, concentrate or focus. I get distracted easily. My attendence at work have suffered. Last week I decided that I really couldn't work anymore. I visited with my rheumy on Tuesday. We went over my symptoms and I askedhim if he would support myn claim for disability. I have FMLA through work and short term disablity would cover me for 12 weeks. He said that he would support it, there was enough in my file. My meds did not seem to be working ( I am on Plaquenil, high blood pressure meds., Cymbalta and an anti-imflamatory.) He said to get him the application for disablity from my work and "let's get the ball rolling". He also referred me to UAB Lupus Clinic. So I go to my work and ask for the application and that opened up a whole can of worms. They met with me, had me sign the paperwork for disability and provided me the app. The said to start my disablity they need a signed fax from my doctor stating when I was to go out. My doc refuses to do this. he says he is not peronally comfortable until he gets the second opinion. What??? Ok, so I think maybe it was a mis-understanding. I told my work and they said, that they still needed something from him, even if it says I am able to work at this time. He refused again. He refused to even speak to me. I had to relay everyhting through his nurse. The nurse actually said "he refuses to speak with you, he is not changing his mind" I have never had a doctor refuse to speak with me! I want to switch doctors, but he referred me to UAB and they are going to forward their results to him. I will have to see him again. I am at a loss, I feel hopeless. I feel like I can not manage to go to work one more day, but I also have no choice. I have been in tears all day long over this. Are there any thoughts for me? Thank you!
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