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Thread: Hi everyone

  1. #1
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    Default Hi everyone

    Hello to one and all. Well I'm a 44 year old psychologist. When I was diagnosed my specialist said "we normally offer therapy but with you being a doctor you will sort yourself I'm sure". I have major heart activity with mine and in 8 years it's never gone onto remission so it's been a hard fight. I have morphine patches etc. My question to everyone is how long do I have left with my heart? As it's in the final stages.

  2. #2
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    Default Re: Hi everyone

    Hello Sorento75,

    Surely, your specialist was joking!!?? I donít know where you live, but you need to finf a vasculitis specialist like yesterday. Hereís link to help with your search: https://www.vasculitisfoundation.org/find-a-doctor/

    This disease can attack just about any organ, so itís not to be trifled with. Itís treatable, but not curable. Too many doctors are either clueless about trearing it, or they use outdated protocols. I hope you get the treatment you need soon!! Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  4. #3
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    Default Re: Hi everyone

    Been told it's in my heart, along with a calcium build up on the valves. That's because it's affected my parathyroid's and thyroid glands. Stomach, liver, kidneys and eyes. Plus a few bits more. Blind now in my right eye. The biologicals aren't having much effect these days. So I've been told to get myself ready for the end. Thing is they just say how long is a piece of string.

  5. #4
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    Default Re: Hi everyone

    Welcome to the forum. Can you please share with us a bit more ? Where do you live ? What meds did you try and for how long ? How are your kidneys (creatinine numbers) ?

    Wg can be treated and should be. Even in the heart.

    Tagging @vdub who might be able to help considering thyroid and parathyroid.
    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. #5
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    Default Re: Hi everyone

    I don't believe psychologists in the US need any medical training, but I'm not sure about the UK. I'm assuming you are from the UK based on your statement "Plus a few bits more." -- that sounds very British. If I'm correct, then you want to go to Addenbrooke. Many of our forum member's go there.

    Many of my problems were only indirectly caused by wegs. My pituitary was affected by wegs. When the pituitary was removed, it caused a collapse of my endocrine system which rendered many glands, to include the adrenal and thyroid glands, totally useless. But, wegs didn't directly have an affect on the endocrine system's failure. The cause of my paralyzed right diaphragm and failure of the parathyroid may or may not had anything to do with wegs -- I have had doctors tell me both ways. I also have a pace maker on my heart, but I can't say the problem was directly caused by wegs, however, there is no other explanation.

    Having fibromyalgia was just my luck of the draw. Jack, who old time member's will remember from 10 years ago, once said that just because you have one bad disease doesn't mean you can't have another. Possibly you have more than just wegs affecting you. Addenbrooke would be a good place to start looking for answers.
    Last edited by vdub; 03-11-2019 at 03:31 PM.
    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....

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  9. #6
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    Default Re: Hi everyone

    IMHO, your doctors failed (and are still failing) to treat you, thus your autoimmune disease attack has gone unimpeded for 8 years.
    Find an entire new team of specialists.
    Start with rheumatologist with extensive Weg experience and a cardiologist with autoimmune experience.
    Best of luck.

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  11. #7
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    Default Re: Hi everyone

    Sorento, what a terrible story! Please get a second opinion. I do know WG can affect the heart from what my rheumatologist has said it causes congestive heart failure. I think if the Drs could perhaps help you it will stop further damage being done & maybe it can repair a little. I think sometimes Drs have no clue & it takes a certain kind of Dr to know they are in over their heads. I believe itís time for you to take charge. You deserve better & to be treated like a human. Donít give up. What medications have you been on? What are you on now?
    Natty


    Sent from my iPhone using Tapatalk

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