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Thread: Here I go

  1. #1
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    Default Here I go

    Well, here I go. I am a 61 year old female from KY. I began having health issues about 9 months ago. The biggest problem being a severe cough that would not go away. I knew something wasn't right- more than just a cold or allergies. Every doctor I saw wanted to just keep throwing a new medicine at me and hope it worked. So after 2 primary care physicians, a cardiologist, and 3 ENT's I finally found an ENT who began looking at why. Last week he said there were "abnormalities" in my P-ANCA. But it was so low he wanted me to see a pulmonologist for a diagnosis- With the research I have done I think maybe he just hoped someone else would have to give me the bad news. I see the pulmonologist on Thursday. Hoping for help in understanding what is happening in my body and where to go for the best treatment possible. So the journey begins.

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  3. #2
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    Default Re: Here I go

    Yeah it can take a lot of time to track down particularly when you're presenting with what appear to be allergies or just aches and pains. Glad you found someone that looked into it a bit deeper. Please keep us updated on the outcome of your pulmonologist appointment
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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  5. #3
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    Default Re: Here I go

    Welcome to the forum, Annmarie.

    P-anca and MPO positive are usually related to MPA while C-anca and pr3 positive are related to GPA. Check here https://www.vasculitis.org.uk/about-...s/what-is-anca

    A vasculitis expert will know what to look for in order to give you diagnosis.

    Before the appointment I suggest you to prepare a list of all of your symptoms, even those which seem unrelated. They might be related. For example, before my diagnosis, in addition to coughing and nose's bleedings I also had rash, gums' bleedings, diarrhea, joints pains and tough fatigue. Each symptom got other explanations but eventually was found out to be wg related.

    Sending you prayers.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  7. #4
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    Default Re: Here I go

    How have your sinuses been?

  8. #5
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    Default Re: Here I go

    The sinuses and upper respiratory are both congested and swollen. Lung CT scan was clear. I did have trouble breathing but ENT has me on an inhaler which has helped for now With the difficulty that so many of you have had getting diagnosed when I see the pulmonologist on Thursday I am going to ask that he begin a referral to Cleveland Clinic. I have already gathered all of my medical records. I am starting a journal of everything up until now and all of my symptoms. Thanks everyone

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  10. #6
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    Default Re: Here I go

    Welcome to the forum. I wish you the best with your pulmonary appt. I know that sinuses and such are what tipped me off that something wasn't right. My ENT at the time took my tonsils out and that seemed to help, but the ICU stay def proved it. My C-ANCA numbers were something like 350 or so.

    To others points, definitely write down all symptoms you have, even if they feel unrelated. I did and my wife was able to tell the Drs what I was experiencing and the nephrologist was like "bingo". I hope that they are able to tell you more once they have a deeper look at all of your symptoms.

    Cheers!

  11. #7
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    Default Re: Here I go

    Well I woke up yesterday to snow and black ice on the roads My pulmonologist is about a 1 1/2 hour drive away. So had to cancel. Good news though. I messaged the ENT who has been so good. I told him I did not want to waste time getting a diagnosis and beginning treatment. Could we just skip the pulmonologist and start a referral to Cleveland Clinic. He said he would be glad to. Now just waiting to hear back on when. I also asked for Dr Villa-Forte like several of you recommended.

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  13. #8
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    Default Re: Here I go

    That's great news. You are making progress.

  14. #9
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    Default Re: Here I go

    Hi annemarie,

    When I was first diagnosed I was cANCA positive. For the past 4-5 years-I have been pANCA positive. My Dr considers it still GPA.
    I hope you find a diagnosis soon & start feeling better!
    Natty


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