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Thread: New Here - Possible GPA with Nasal involvement

  1. #21
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    Default Re: New Here - Possible GPA with Nasal involvement

    My heart goes out to you Rae. I know how it feels to be overwhelmed by serious symptoms and a lack of proper response to them. I don't know if it's an option for you but over here there is a 'new to me' option of getting a medical advocate. I recently talked to one myself and found it to be very helpful. Of course they charge for continued help and I know that's not option for everybody. Still, even the initial conversation was for me helpful and encouraging. In my case I got some ideas that had not occurred to me on my own. It's good to have even a little help.

  2. #22
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    Default Re: New Here - Possible GPA with Nasal involvement

    The pandemic has impacted healthcare almost everywhere. I remember last year when in my area of rural Minnesota only emergency care was being offered for a while since all the hospitals and clinics felt overwhelmed with the large number of virus cases. Most also experience staff shortages as staff members became infected. Right now in our area the virus has showing a rapid significant increase which is probably due to one of the mutations that is more contagious and more infectious.

    I'm not familiar with your healthcare system the but I have in the past had insurance plans that function like an HMO which meant we were assigned a primary care physician who was essentially a gatekeeper to limit our access to other specialties. I was usually pretty fortunate about being able to get referrals to specialists I wanted to see but the backup plan was to go to the emergency room or the walk in clinic for urgent care.

    I have in the past been a patient at the world-famous Mayo Clinic in Rochester Minnesota. I remember when my local physicians had recommended I go see them for care since they were uncertain how to proceed with my GPA symptoms and suppressed immune system for the issues I was experiencing. I had trouble getting an appointment to be seen by my regular doctor at the Mayo Clinic and was advised to go to their hospital emergency room which would get me into the Mayo Clinic care system

    Maybe trying to use the emergency options in your area might help you move up the ladder to a higher priority. If nothing else you could probably justify such contact as having an anxiety attack from the lack of necessary care.

    Quote Originally Posted by Rae82 View Post
    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.
    Knowledge is power! Wisdom is using it to make good decisions!

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  4. #23
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    Default Re: New Here - Possible GPA with Nasal involvement

    Yes our GPs act very much as a gatekeeper and they refer on to the services that they think can help. I have called my GP today and he is going to write in response to my previous ENT appt to see if I can get seen quicker. I will go private for my next appointment if needs be, I just need someone to properly listen to my concerns and investigate from there. My GP was actually surprised today when I told him that nobody had actually looked up my right nostril properly. The ENT consultant scoped my left nostril and didn’t bother with my right. Just had a little look at the septum.

    Quote Originally Posted by drz View Post
    The pandemic has impacted healthcare almost everywhere. I remember last year when in my area of rural Minnesota only emergency care was being offered for a while since all the hospitals and clinics felt overwhelmed with the large number of virus cases. Most also experience staff shortages as staff members became infected. Right now in our area the virus has showing a rapid significant increase which is probably due to one of the mutations that is more contagious and more infectious.

    I'm not familiar with your healthcare system the but I have in the past had insurance plans that function like an HMO which meant we were assigned a primary care physician who was essentially a gatekeeper to limit our access to other specialties. I was usually pretty fortunate about being able to get referrals to specialists I wanted to see but the backup plan was to go to the emergency room or the walk in clinic for urgent care.

    I have in the past been a patient at the world-famous Mayo Clinic in Rochester Minnesota. I remember when my local physicians had recommended I go see them for care since they were uncertain how to proceed with my GPA symptoms and suppressed immune system for the issues I was experiencing. I had trouble getting an appointment to be seen by my regular doctor at the Mayo Clinic and was advised to go to their hospital emergency room which would get me into the Mayo Clinic care system

    Maybe trying to use the emergency options in your area might help you move up the ladder to a higher priority. If nothing else you could probably justify such contact as having an anxiety attack from the lack of necessary care.

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  6. #24
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    Default Re: New Here - Possible GPA with Nasal involvement

    If it is possible it might be good to call the ENT's office and ask to talk to the ENT's nurse and explain your situation and why you need to be seen soon. I found I'm somehow able to get appointments sooner when I do this in my own situation. Ask to be on the waiting list for any cancellations too. I've actually gotten moved up a bunch of times with just that one trick.

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