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Thread: New Here - Possible GPA with Nasal involvement

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    Default New Here - Possible GPA with Nasal involvement

    Hi everyone, my nameís Rae. I'm currently having tests for possible Wegener's because of scabs on my septum that i had for years and some symptoms that I've been having for the past 6 months including night sweats, palpitations and a bounding pulse.
    My nose has had a slight dip at the mid vault/internal valve area on one side for a couple of years but I've noticed recently that this is much more obvious now. Could this be my nose collapsing? There is no dip over the bridge or on the other side yet.
    My nasal breathing isn't great. At times I feel like there's a loss of sensation of breathing in my nose and my automatic breathing had all but disappeared and I feel like I'm manually breathing. Other times it feels congested and hard to get air in. My nose inside is not very sensitive at all and I am able to covid swab my nose with absolutely no flinching or discomfort. I also jolt awake at night almost like apneas. I have had pain in my left trap muscle for the last 5 months and had a period of neck pain over the carotids which has now gone away. An ultrasound was fine.
    Over the course of the months I've had several ESR tests and c-reactive protein tests and levels have never been raised. I'm awaiting results from specific GPA blood tests and have had CT scans requested. I have no problems lung/chest wise and had a 24 hour urine test done which came back fine. All full blood count levels were also fine. The nasal crusting has cleared up with Naseptin cream. Could this be GPA? Thank you

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    Default Re: New Here - Possible GPA with Nasal involvement

    GPA can cause a variety of symptoms and can be very difficult to diagnose. It is important that you persist in your efforts to get an accurate diagnosis and treatment for whatever is creating your symptoms. If your symptoms are rather unusual you may have to resort to going to one of the few places in the world where they have considerable expertise at diagnosing are rare diseases such as GPA.

    I did have crusting in my nose for several years before it eventually evolved into a full-blown serious flare of GPA which cause great damage to my body including kidney damage, lung damage loss of hearing, loss of balance, and increased neuropathy. I had various other symptoms which in hindsight were typical for GPA but none of the various specialists at different clinics ever put it together until I developed a very serious flare and it still took a consultation with Mayo to figure out what was attacking my body.

    Good luck with sorting out a diagnosis for your situation and getting the care you need to address the situation and improve your health.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: New Here - Possible GPA with Nasal involvement

    Thank you drz. In all honesty Iím praying that it turns out not to be GPA. I have been reading a lot of diagnosis stories on here and you are all so brave coping with all the terrible symptoms that can come along with GPA.

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    Default Re: New Here - Possible GPA with Nasal involvement

    drz,

    How did your hearing loss come about? Asking because all the ear problems I'm starting to have. How did it start and progress?
    -Jeannette

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    Default Re: New Here - Possible GPA with Nasal involvement

    Rae,
    I agree with drz. Keep at it and don't give up. Try different doctors or clinics if you are not getting anywhere. Hopefully it's not Wegeners. Be persistent and you'll get to the root cause. Pay close attention to your body symptoms. Tracking your symptoms in a journal sometimes helps. I had to do that because I would forget after a while. Also, take pictures of any spots or signs of inflammation (edemas) on your skin. I had red blotches on my legs and edemas in my joints.
    Good luck and let us know how we can help.

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    Default Re: New Here - Possible GPA with Nasal involvement

    The journal is a great suggestion. It doesn't need to be elaborate either just brief notes help a lot later when memory starts to fade on how things happened.

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    Default Re: New Here - Possible GPA with Nasal involvement

    A Google spreadsheet was my documentation of every symptom and doc visit. It has become my journal I can update from any place and share with any doctor when needed.

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    Default Re: New Here - Possible GPA with Nasal involvement

    Quote Originally Posted by jmq View Post
    drz,

    How did your hearing loss come about? Asking because all the ear problems I'm starting to have. How did it start and progress?
    -Jeannette
    My first hearing loss began in childhood when a very bad Dentist blew out my eardrum by injecting Novocain into my eustachian tube. I went swimming with the perforated eardrum and got a serious ear infection. Recurrent infections due to a perforated eardrum led to a recurrent cholesteatoma that gradually dissolved all of the bones in my middle year and created a serious conductive hearing loss. This process took place over many years and there were several operations to try to repair the damage and restore the hearing without any luck.


    The hearing in my other ear was normal until my GPA had a serious flare that almost killed me. It had attacked my kidneys and lungs so I had blood in my urine and was coughing up blood. Then one morning I woke up deaf. My balance also seemed impaired. At that point my GPA had not yet been diagnosed and it took over another week until I could get transferred to a bigger hospital where they had the experience and expertise to confirm the diagnosis of GPA. They tried to restore my hearing with mega dosage of steroids including direct injections into my eardrum but it was to no avail.


    Before I could get a BAHA operation to restore some of my hearing I had to attain a drug induced remission from the GPA for at least a year so it was about two years after my GPA diagnosis was confirmed that I was able to regain some more adequate hearing. My only hearing is on the inside of the ear that has no conductive mechanism but the BAHA mechanism will pick up the sound and transmitted through my skull to the inner ear on the other side. I also have a behind the ear hearing aid on the ear with no conduction which does give me some limited hearing. My speech showed a significant deterioration before I regained some more adequate hearing and then it took several months to improve back to the level before the hearing loss.

    Hearing loss is a very debilitating condition and many research studies indicate the isolation and depression created from hearing loss is even greater than from the loss of vision. Probably because people do not make jokes about blind people and are more willing to help them.
    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 Rae82 View Post
    Thank you drz. In all honesty I’m praying that it turns out not to be GPA. I have been reading a lot of diagnosis stories on here and you are all so brave coping with all the terrible symptoms that can come along with GPA.
    Welcome, Rae. I, too, hope you don't have GPA. But if you do, know that some have fairly mild, treatable cases, and you could be one of those. Also, it seems that you are getting it investigated relatively early, before it might start to involve the other typical areas such as lungs and kidneys, and cause damage there that would have been mitigated by treatment. I had ear and sinus involvement for a couple of years before diagnosis. Even though I had a good, experienced ENT, he has many cases of severe recurring sinus infection, often caused by allergies, and I seemed no different than those. So I was coasting along with allergy shots and repeated short courses of antibiotics and prednisone, which worked great to clear things up temporarily. But eventually it went into my lungs and I was diagnosed. It has been nearly 10 years since then, and it's pretty well under control, but I am still on a moderate dose of maintenance meds. I did get saddle nose right around diagnosis, which maybe you can avoid with prompt treatment, if they find you have GPA. My lungs were not as bad as some people's, but the damage caused early on is mostly still there and has affected my breathing permanently. With a prompt diagnosis, this might not have happened. I am lucky to have had no kidney involvement, and very little joint pain. I do have a fair amount of fatigue. New symptoms can crop up any time, but the maintenance meds will help prevent that. I must have regular CT scans and bloodwork to make sure things are on an even keel. All this is trying to be encouraging that if you do have GPA, you may be able to limit the severity with prompt treatment. It doesn't really go away, but I think people with early treatment will go into an earlier and longer lasting remission. It is manageable and may not affect your life to any great extent if you keep on top of it and stay in good health otherwise. Best of luck, and be sure to let us know how it goes. I still hope you don't have it, but if you do, you have come to the right place!
    Last edited by annekat; 03-15-2021 at 06:00 PM.
    Anne, dx'ed April 2011

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    Default Re: New Here - Possible GPA with Nasal involvement

    Thank you Anne.
    I have had results from my specific vasculitis tests - are they called anca tests and they have come back negative. I’m still awaiting CT scan results. My ESR and C-reactive protein are also negative again. These have never been raised and I’ve had them done about 5 times now in the last 6 months. I’m thinking that it may not be GPA after all but am awaiting another appointment with the ENT consultant I am seeing.

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