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!View Thread
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