poppetkazutaka Posted February 1, 2010 Report Share Posted February 1, 2010 Apparently my ENT works on Sundays, because while I was torturing myself with sewing then, he calls to deliver the news of negativity. He seemed a little disappointed, as did I, because we were so sure that it was Wergener's. I tried to have a good cry after the phone call, only to find I can't produce but two tears. My nose, however, poured out rivers.I got a good laugh out of the irony of that, and decided to go with the six page packet of junk that the rhumatologist made me fill out to see her on Tuesday. Then that was it. Because obviously after six years and that many doctors and tests, if they haven't found anything with a name yet, and I'm slowly turning into a ball of scarring tissue...really...what are they going to find? I give her a visit. That's it.I can't keep playing the hope roller coaster anymore. They aren't going to find anything. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted February 1, 2010 Report Share Posted February 1, 2010 I'm glad you don't have it, though! That's something I hope I don't have and wouldn't wish on anyone. So try to rejoice in that you don't have something very hard to deal with.I know you want answers, as we all do, but if they can rule out something like this, that's good news!(I believe you are referring to:)"Wegener's granulomatosis is a form of vasculitis that affects the lungs, kidneys and other organs. Due to its end-organ damage, it can be a serious disease that requires long-term immunosuppression." Quote Link to comment Share on other sites More sharing options...
poppetkazutaka Posted February 1, 2010 Author Report Share Posted February 1, 2010 I'm glad you don't have it, though! That's something I hope I don't have and wouldn't wish on anyone. So try to rejoice in that you don't have something very hard to deal with.I know you want answers, as we all do, but if they can rule out something like this, that's good news!(I believe you are referring to:)"Wegener's granulomatosis is a form of vasculitis that affects the lungs, kidneys and other organs. Due to its end-organ damage, it can be a serious disease that requires long-term immunosuppression."Yeah, but think about it, if we're both so sure I have it...then I'm definately presenting symptoms of it. So if I don't have it, I'm still suffering from something similar to it.I just don't know anymore if it's worth it. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted February 1, 2010 Report Share Posted February 1, 2010 Don't give up. Just have hope they'll find something so at least you know (and possibly can treat it).Right now my Rheum is trying to narrow down what I have. Have you had a positive ANA test? I'm being looked at for Lupus and Sjogren's Syndrome (which can cause dry mouth/eyes and you have dry eyes it sounds like)?Do you have a follow-up with your Rheum to go through the results and see what's next? How controlled is your POTS right now?I wish you well and hope they figure out what is going on...but it's not always easy! Quote Link to comment Share on other sites More sharing options...
poppetkazutaka Posted February 2, 2010 Author Report Share Posted February 2, 2010 Don't give up. Just have hope they'll find something so at least you know (and possibly can treat it).Right now my Rheum is trying to narrow down what I have. Have you had a positive ANA test? I'm being looked at for Lupus and Sjogren's Syndrome (which can cause dry mouth/eyes and you have dry eyes it sounds like)?Do you have a follow-up with your Rheum to go through the results and see what's next? How controlled is your POTS right now?I wish you well and hope they figure out what is going on...but it's not always easy! Last time I had an ANA was about three years ago and it was false. My gen doctor at the time, the woman idiot who said a lot of my heart and head problems were stress caused by my mom's attempt at suicide though I had never told her about it (she treats my mom, too and had no right to cross our histories like that) said I was just going to have to suck it up and deal with the pain.EDIT: Of course, now that I think about it, I got some blood tests back in my history from her and found one from waaay back when I was first seeing her and it showed I had a borderline low red cell count and she never told me about that. So she could have been lying about that, too. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted February 3, 2010 Report Share Posted February 3, 2010 From what I have read...the PANCA and CANCA can be negative and you can still have Wegeners...I was convinced that I had it as my chest hurt so bad and couldn't breathe and my nose was running...and I got it after a sinus infection. But alas...it is only POTS.which I am truely grateful of. Why does he think it is Wegeners? There is a support site you can runyour blood work by...my red blood count was getting low or high can't remember...but it was really from just being so sick with POTS before beta blockers and mega amounts of rest. Feel free to PM me...I went down this road for myself.Erika Quote Link to comment Share on other sites More sharing options...
poppetkazutaka Posted February 5, 2010 Author Report Share Posted February 5, 2010 From what I have read...the PANCA and CANCA can be negative and you can still have Wegeners...I was convinced that I had it as my chest hurt so bad and couldn't breathe and my nose was running...and I got it after a sinus infection. But alas...it is only POTS.which I am truely grateful of. Why does he think it is Wegeners? There is a support site you can runyour blood work by...my red blood count was getting low or high can't remember...but it was really from just being so sick with POTS before beta blockers and mega amounts of rest. Feel free to PM me...I went down this road for myself.ErikaHe thought it was because I have a suddenly perforated septum, constant nosebleeds, pain all over, and a body making masses of scar tissue over my organs I guess that could be considered nodules of some sort? I haven't seen the tissue, they just tell me its 'scar tissue'. And I had had a sinus infection for over six months that wouldn't resolve. My kidneys had begun to get affected as well.But I guess that's not it. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted February 6, 2010 Report Share Posted February 6, 2010 Truely...I spoke with a woman last year before my diagnosis...she said it depends on when you are being tested (ANCA). She mentioned that hers was always negative as well. Finally when she completely collapsed they did a lung biopsy...and found Wegeners. She said it is still negative at times...depends if she is in a flare or not. I am no doctor..for sure. But, keep asking. There is a foundation for Wegeners. They have tons of information. Keep us posted. Good luck.Erika Quote Link to comment Share on other sites More sharing options...
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