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  1. #1
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    Default First post

    I have been viewing the forum for a long time but this is my first post. First off, compared to everybody here I am fairly healthy and I am very thankful for that. I was first diagnosed in 2014 when I developed epischleritis. After 9 months 8 doctors 4 who were opthalmogists, 1 rheumatologist and 1 cardiologist, the last opthalmogist I saw tested me for C-ANCA which was positive. This was in 2014. I believe I had been sick for a quite a while as months before I developed eye symptoms I remember standing in more horse pasture thinking. I am too young to feel this tired. I had no energy or stamina. I saw the first rheumatologist prior to the C-ANCA test, since I was born with heart valve defect the first rheumatologist attributed all my symptoms to that. The cardiologist then cleared me and said I was just deconditioned and needed to exercise more. I was then referred back to rheumatology who dismissed all my symptoms except for the schleritis. And only said, I had C-ANCA associated vasculitis. At that time I also had pain in feet and hands and poor exercise capacity. He put me on Methotrexate for 6 mos. I ended up in hospital with pneumonia though afterwards the rheumatologist indicated it might have been a flare and sent the insurance company the code of necrotizing respiratory granulomatosis. After this hospitalization he finally recommended Rituxan and said that he would have to call what I have Wegners for the medication to get covered. My first treatment helped but I still had flare as I had not been given the proper dose. The second treatment I felt much better. I was exercising and my energy and exercise cacity has improved greatly.

    My frustration is knowing what new symptoms are related. In the midst of long work up I was also with hearin loss and now wear a hearing aid. The ENT was adamant that it was not related to Wegners. At one point the rheumatologist documented that my foot pain and tingling was anxiety!!! I don't look at the notes any longer. My most recent symptom is in my ear again. I saw nurse practitioner in my PCM office who admitted she knew nothing about Wegners but was certain that the ear symptoms were not related. I am a social worker and have with chronically I'll patients for many many years. BUT it doesn't help. Sometimes I feel like the providers think I am crazy!!!

    Sorry for the long post. I guess I am just frustrated today.

    Sent from my SAMSUNG-SM-N910A using Tapatalk

  2. #2
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    Have you seen a doctor who has great experience with Wegs and is a recognized expert in this field? They can best assess you and guide as you evaluate symptoms and relationship to Wegs.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #3
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    Yes. I should have added that I am fortunate to live in an area with a good rheumatology department. And my current rheumatologist is one of the experts in wegners.

    Sent from my SAMSUNG-SM-N910A using Tapatalk

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    Check out book by Sarah Ballentyne
    The Paleo Approch
    Reverse Autoimmune disease and heal the body.
    i atribute my current health to this book

  5. #5
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    Default First post

    Hi Shawn, I'm glad you are doing fairly well but sorry you got such a run around from your doctors! Does your current experienced rheumatologist make you feel like you are crazy too or are you finally being treated for this disease appropriately?
    I hope you are!

    How are you being treated? I was started on prednisone 60 mg and ritux infusions. I'm now tapered to 25 mg pred and am doing fairly well tho I still have strange ear sensations and breathing issues. I am 3 months into the dx and coming to grips with it all after the initial rush of treatment is challenging as I feel some slight depression and anxiety.
    Last edited by Gab122; 11-12-2016 at 06:35 AM.
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    Quote Originally Posted by Gab122 View Post
    Hi Shawn, I'm glad you are doing fairly well but sorry you got such a run around from your doctors! Does your current experienced rheumatologist make you feel like you are crazy too or are you finally being treated for this disease appropriately?
    I hope you are!

    How are you being treated? I was started on prednisone 60 mg and ritux infusions. I'm now tapered to 25 mg pred and am doing fairly well tho I still have strange ear sensations and breathing issues. I am 3 months into the dx and coming to grips with it all after the initial rush of treatment is challenging as I feel some slight depression and anxiety.
    I have been having rituxan infusion every 6-9 months. No systemic steroid just steroid eye drops when I have flare which is every 2-3 months on rituxan. Prior to rituxan I was only able to get off the drops for 2 to 3 wks at a time.

    Sent from my SAMSUNG-SM-N910A using Tapatalk

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    Quote Originally Posted by Middle of no where View Post
    Check out book by Sarah Ballentyne
    The Paleo Approch
    Reverse Autoimmune disease and heal the body.
    i atribute my current health to this book
    I doubt it. Sorry.
    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.

  8. #8
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    Welcome to the forum Shawn. Ears symptoms are sure wg related. When was your last rtx ? How much pred are you on ? Are you still on mtx ?
    Listen to your body and trust yourself. Dont let them tell you that its "anxiety" etc. I was accused for years of being hypochondriac, having "psycho somatic symptoms" etc. As a psychologist I even believed it. Untill wg almost killed me.
    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.

  9. #9
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    Check out book by Sarah Ballentyne The Paleo Approch
    Keep in mind that Sarah Ballentyne is not a medical doctor....

    One thing I find absolutely amazing, Shawn... Are you really tapping in these long messages on a smartphone? A simple 1 for yes or 0 for no will suffice. :-)
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  10. #10
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    Quote Originally Posted by vdub View Post
    Shawn... Are you really tapping in these long messages on a smartphone? A simple 1 for yes or 0 for no will suffice. :-)
    My vote is 1. If you forensically look at his post, several words were auto-corrected by what looks like a phone or tablet...
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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