feel like miss diagnose

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I am so depressed cause I feel like my Dr thinks I am healed. How do u get told u have e.g. and still have crazy stuff happening and it's not due to wg I just found out the house I lived in at time when my body and blood was doing strange stuff that the water is contaimated with heavy metals. Now I feel like that might have been what was happening to me. Not wg. Scared to know I might been diagnosed wrong.

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    I was orginally diagnosed with WG in 1983. I have had 4 relapses, most recently in July of this year, and have one dr saying it isn't the WG, when I know for a fact it is. All tests and symptoms confirm this. He came on scene 3 months after prednisone was started, so all symptoms were already being treated, has a quick look up my nose and down my throat and says, "nope, no active Wegners here." Trust yourself! We have to be our own advocates when the dr's won't believe us! Thankfully one of my other speciallists knows me well enough to know that I know my symptoms. Seek a second or third opinion if you can! 
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    • Posted

      How did you know you relapsed? I relapsed had no ideas not detected until sinus surgery done snd from a serious eye absess. Never showed in bloodwork. After months of a sinus infection it brought WG back
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    • Posted

      I actually didn't realize it until I ended up in hospital with a pulmonary embolism (which I think was actually the WG) and a stroke. I thought I was having a heart attack. Chest pain, numbness in right arm. Ended up being diagnosed with PE and mini stroke, but I had persistent nose bleeds at this time as well and started getting joint stiffness so my dr said yes, your WG is active and we need to treat it. Had I not had the symptoms of a heart attack, it would have been months and months before I went to the dr and could have ended up worse that I am now. I am the type of person to shrug off symptoms and say "oh, there's nothing wrong with me" and I had a lot going on at this time. I had just finished 19 doses of chemo for breast cancer, my husband was going for surgery, and trying to work and take care of the house sad 
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