feel like miss diagnose

Posted , 4 users are following.

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.

0 likes, 6 replies

6 Replies

  • Posted

    It's never a bad idea to get a second opinion...have they talked about chelating your blood to get the heavy metals out of your system.  I would also suggest that a doctor retest for the WG
    • Posted

      He has and negative he said I was healed with WG and my fatigue and joints swell showed him pics. Night sweats. Voice bad lungs hurt cough with bronchitis alot
  • Posted

    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! 
    • 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
    • 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 
  • Posted

    Get another opinion. Request another Vasculitus s Specialist. Get retested

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.