Lupus Community

My experiences are not as bad as yours have been, but mine have been as discouraging! For over a year now, I have had severe dizziness, almost on a daily basis, so bad that I walk with a cane now to keep my balance better. Last July I had an experience which I thought was a mini stroke, but they kept telling me there was no evidence of it. Had an MRI, then went to a neurologist, who ordered several blood tests, plus an ultra sound of my carotid arteries. It took almost 3 months to get the results to the neurologist, (his office kept telling me it hadn't been faxed over, when I knew it had been). Finally on the 4th try, he got the fax, then had them call me, tell me the tests were normal, so he didn't need to see me again. But, on one of the blood tests, my ANA was positive, plus my titer level, (antibodies) was WAY low, normal is 1 in 80, mine was 1 in 614, but the pathologist told my ANP that at my age, nothing to worry about. Meanwhile the dizzies have continued. Plus, I have had really red outbreaks around my cuticles, plus last summer had a rash that they THOUGHT was sun poisoning. And, then the same rash this summer, only worse. It's on my chest area, back of my neck & ears, on both arms, & on my forehead. After 2 rounds of steroids, & no help, I started looking online, & saw a photo of lupus outbreak around the cuticles of the nails. Mine isn't that bad, but when I went to the dr 2 weeks ago, I specifically asked her about lupus. That's when she decided to have them do a specific blood test for it. And, although she never actually SAID I had lupus, she put me on medication for it. So, now I am taking it, but so far the rash isn't going away, but it isn't spreading either. I know next to nothing about lupus, have no insurance, plus 2 more years before I can qualify for Medicare. So believe me, I understand your frustration. I have basically had to give up my part time job, which has really hurt financially, & I owe about $7000 in medical bills. Plus in May of this year, I had another mini stroke & ended up in the hospital overnight. And, they did absolutely NOTHING for me, other than gave me a blood thinner tablet, which I could have taken at home! So, just keep on trying to get some one to listen too you, & I will certainly remember you in my prayers. My belief & faith in God, plus a loving family, & great friends, are the only things that have gotten me through this so far, & I know will keep me in the future. You have already proven how strong of a person you are by not just giving up. And, I am taking plaquenil for the lupus, which is used to treat rheumatoid arthritis, & also for malaria. My APN told me it was a dangerous med, but the side effects listed are some of the same ones you have with lupus anyway. So, if you can keep your insurance long enough, ask to be sent to a rheumatologist. And, keep checking on here too. They have some good people on here that can really help.