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Thread: New Here - Possible GPA with Nasal involvement

  1. #11
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    Default Re: New Here - Possible GPA with Nasal involvement

    Rae, I am one of the 20% who have GPA who have never had a positive result on an ANCA test. Or at least it is so minimal that itís not considered positive. I donít know the explanation, but itís something to keep in mind. The other tests, though, should be showing something, though I think some of them can take some time to show up. I hope this means you donít have GPA. If the ENT thinks thereís a place in your nose that would suggest a sample for a biopsy, he could do that. Mine did it right in his exam chair with a topical anesthetic, and it wasnít bad. Thatís how I got my dx, although they can give false negatives. Maybe you just have a deviated septum, which could explain the dip on one side. Those run in my family. Good luck!
    Anne, dx'ed April 2011

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    Default Re: New Here - Possible GPA with Nasal involvement

    Yes this does concern me a little but with the septal scabs being something I have dealt with for years I would have expected one of the tests to show some elevation, but they are not even remotely raised. Blood screen all good otherwise as well. I donít know whatís going on. My breathing is completely manual and Iím thinking about every breath because my nasal breathing just seems so wrong. If I just donít breathe my body doesnít seem to be doing it for me. Iíve had to start taking medication at night to sleep because I was jolting awake, almost like my body was breathing wrong in my sleep and my eyes were flicking back and forth when my eyes were closed. The nostril where there is the collapse near the valve seems strange to breathe through at night, almost like a loss of resistance. My nose gets so dry as well. One doctor has tried to palm it off as anxiety but I know my body and I know that my nasal breathing is so different now.
    Iíve wondered about a paralysed diaphragm but then Iíve had about 4 chest x-rays done in the last 6 months and nothing has been picked up.

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    Default Re: New Here - Possible GPA with Nasal involvement

    If you think your sleep is being affected, you might consider doing a sleep disorder test that might shed some light on what is going on in your body.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: New Here - Possible GPA with Nasal involvement

    Quote Originally Posted by drz View Post
    If you think your sleep is being affected, you might consider doing a sleep disorder test that might shed some light on what is going on in your body.
    I asked my GP about a sleep study because I felt like I have apneas. He said I didnít fit the bill because Iím not overweight and donít snore chronically. Other doctors have said thatís rubbish and itís not just overweight people who have apnea, but Iím getting so tired of trying to self advocate. I keep coming up against anxiety excuses but I know my body and this is not anxiety. My breathing is like Iím breathing through straws both feeling and in noise. My nose has collapsed in on one side, I have chronic shoulder/trap pain and my breathing is almost completely manual when Iím awake. Iím exhausted from the completely disordered breathing.

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    Default Re: New Here - Possible GPA with Nasal involvement

    Quote Originally Posted by Rae82 View Post
    I asked my GP about a sleep study because I felt like I have apneas. He said I didnít fit the bill because Iím not overweight and donít snore chronically. Other doctors have said thatís rubbish and itís not just overweight people who have apnea, but Iím getting so tired of trying to self advocate. I keep coming up against anxiety excuses but I know my body and this is not anxiety. My breathing is like Iím breathing through straws both feeling and in noise. My nose has collapsed in on one side, I have chronic shoulder/trap pain and my breathing is almost completely manual when Iím awake. Iím exhausted from the completely disordered breathing.
    I think you might want to check it out with a sleep disorder specialist since many times doctors do make mistakes. Years ago I was told by a highly recommended internists that I did not have diabetes even though my Blood Glucose levels were elevated way beyond normal range. And to compound his error and display his amazing ignorance he told me not to worry about it. My mother had just died from it so I was naturally concerned about whether i had it. He then went on to say I not only did not have it when I definitively did but I would never get it cause I was too thin. I also ran into similar mistakes when trying for three years to get my GPA symptoms diagnosed correctly. The find a zebra web site can sometimes help you figure out uncommon disorders. When i put in all my symptoms it always came up with GPA as first or second possibility but this was only years after my diagnosis. If I had found it earlier I might have saved myself a lot of serious body damage.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: New Here - Possible GPA with Nasal involvement

    Hereís the thing. Your specialist, no matter how good, is not living your life and experiences. If your sleep is being interrupted, and you have a collapsed nostril, there may be sinus issues involved, or, as one other member reported (my apologies for not remembering who it may be - if youíre out there, chime in) gastric reflux causing swelling and acid burns in the back of the throat. I know its a pain to be continually advocating for yourself, but sometimes itís the only way to get something done, and considering how sneaky Wegs can sometimes be, itís ALWAYS better to follow up symptoms rather than ignore them. Donít let it lie, keep telling your specialist you need a sleep study, or have a good discussion about alternative causes. Keep a diary, get one of those respiration monitors, show them the results. Is it consistently bad, or only in certain sleep positions? Does it get better or worse dependant on your nightly meal? Does any medication affect it?

    my breathing hasnít been affected by Wegs yet, thank (insert deity here), but I know itís always a distinct possibility in a flare. If it was me in your position, Iíd be a right pain, Iíd yell and scream at my docs until something is done.
    Life lessons for all of us;

    Never eat at a place called Maís.
    Never shoot pool with a guy called Pop.
    Never try to eat anything bigger than your head.

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    Default Re: New Here - Possible GPA with Nasal involvement

    Great advice Peter. I might have been one of the reflux people you are thinking of here. I had it for many many months and saw a bunch of doctors and did a bunch of tests. I had one doctor look at me briefly and tell me it wasn't really too bad. Really, I'm literally inhaling acid in my sleep and coughing to the point of breaking ribs, not able to sleep for weeks and 'its' not really too bad'.
    The pain and suffering alone was so bad I contemplated putting an end to it- but hey, at least I had someone let me know it 'wasn't really too bad'. That always helps.
    Its a long story but I consider myself a miracle that now days I have zero reflux problems and have no restrictions around it. So GOOD things can happen too.
    I came within ONE week of getting very invasive surgery to deal with it and delayed it as things were improving for some reason.
    So, the point of me bringing this up is to reinforce your comment about the need to advocate hard for yourself. Trust what you know, insist on timely action to figure things out and pursue treatment. Even my old time doctor from way back told me "No one is going to care as much about what happens to you as you do" He was actually encouraging me to advocate as I tended to not really stick up for myself.

    I have recent experience with an otherwise good doctor dragging his feet and dropping the ball on getting me timely treatment. This has resulted in several months of suffering that I know from experience could have been avoided. As a bonus he found a way to blame ME for being sick. I still like him and respect him but no one is perfect all of the time.
    I pushed and pushed hard because no one else was going to.

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    Default Re: New Here - Possible GPA with Nasal involvement

    Thanks me2, I thought it might have been you, but couldn’t find the thread. Hopefully it never comes to surgery.
    Life lessons for all of us;

    Never eat at a place called Maís.
    Never shoot pool with a guy called Pop.
    Never try to eat anything bigger than your head.

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    Default Re: New Here - Possible GPA with Nasal involvement

    Thanks Peter. Things are really amazing for me in the reflux department. I literally thank god almost daily that the problem is gone and I am enjoying perfect non/reflux health.

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    Default Re: New Here - Possible GPA with Nasal involvement

    Quote Originally Posted by Peter Marsham View Post
    Here’s the thing. Your specialist, no matter how good, is not living your life and experiences. If your sleep is being interrupted, and you have a collapsed nostril, there may be sinus issues involved, or, as one other member reported (my apologies for not remembering who it may be - if you’re out there, chime in) gastric reflux causing swelling and acid burns in the back of the throat. I know its a pain to be continually advocating for yourself, but sometimes it’s the only way to get something done, and considering how sneaky Wegs can sometimes be, it’s ALWAYS better to follow up symptoms rather than ignore them. Don’t let it lie, keep telling your specialist you need a sleep study, or have a good discussion about alternative causes. Keep a diary, get one of those respiration monitors, show them the results. Is it consistently bad, or only in certain sleep positions? Does it get better or worse dependant on your nightly meal? Does any medication affect it?

    my breathing hasn’t been affected by Wegs yet, thank (insert deity here), but I know it’s always a distinct possibility in a flare. If it was me in your position, I’d be a right pain, I’d yell and scream at my docs until something is done.
    The problem I have is that the docs don’t seem to be listening to me. My GP has written me off as being anxious. I totally agree that whatever is affecting my breathing has caused anxiety. I’d say that’s pretty understandable seeing that breathing is pretty important to staying alive. I went to an ENT with my breathing problems and because I mentioned the scabbing on my septum, he wanted to test for GPA. All tests have come back negative. However, I don’t really think they’re listening to me about the structural changes to my nose. I can see that my right nostril is now noticeably thinner than my left. There is now an obvious dip in the mid vault area of the nose and the internal valve inside feels like it’s buckled/split and is not now one smooth piece like the other side. The NHS is on absolute go slow because of Covid and just because it’s underfunded. I had a CT scan on the 4th March and I still have not received results. When I chase with the consultant’s secretary I get responses back about how they’re dealing with Covid and they can’t speed things up. Meanwhile I’m suffering every day with not being able to breathe right, breathing manually and feeling dizzy and lightheaded from it. Advocating for myself just seems exhausting and futile.

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