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Does This Sound Like Lupus or your experiences?
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graphicsgoddess posted:
So, here is my story. In 2008 I got a sore throat, then it went away. two days later my chest hurt super bad, so bad I could not move and laid sitting up on the couch for a week-I ran 106 fever for a week and finally went to the hospital -though I had not had health insurance. They found almost a liter of water around my heart (a massive pericardial effusion), pneumonia and anemia. I was urinating blood and protein. For a month I was in and out of hospitals and intensive care. I actually thought I died at one point but (obviously) I did not, as I just now have the memory of being in ice packs and freezing water. At the end of the month the fevers started to subside, untill one day they came back and hit about 104, I was driven to a teaching hospital in Indianapolis Indiana (near where I live) and told after breaking out in hives also that they thought I had mixed connective tissue disease. Parts of Lupus, parts of Scholaderma (sorry cant spell this) and Parts of Ra. I have never tested positive for ANA but always always have higher levels of inflammation in my blood markers. Flash forward four years and I get frontal lobe seizures, I have lost 60 pounds, I break out in random rashes, I get inflammation of the chest wall, stomach lining, I break out in huge welts on my uper arms and get a "beard" of hives on my face a few times a month, sores in my mouth from time to time and of course joint pain and tons of heart pain. I go through cycles where I go about three weeks and vomit every morning and through out the day. I sometimes get a "flash" where I get super hot, break out splotches all over my chest and then urinate a little. I have had times where I lost vision for about 20 seconds totally out of no where. What I want to know do any of you have similar experiences? Since I dont test positive for any ANA tests the dr told me that they can not diagnose me with lupus for sure, and I just MIGHT Have mixed connective. How do I go about getting help if this is what it is but I have no way to prove it? In my state I cant get medicaid (because of this I work very little as Im sure many of you also struggle with) and Its difficult to get and keep coverage because every six months they make me reprove I need coverage and it takes 3 months to prove it because of backlog - not to mention I dont have an accurate diagnosis-Does anyone have any advice for someone having issues with rheumatoid diseases? Ill take any tips of advice I can get at this point. Im just so miserable anymore. Life is difficult. Thanks for any replies!
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ssh49tn responded:
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.


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