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Thread: Please Help - NEED WG specialist

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    Default Please Help - NEED WG specialist

    Hi everyone! Well I have a great team of doctors however none are experienced (much) with Wegeners. My GP would like me to see a doctor who specializes in WG. It's possible I'm in my first relapse, he wants to be sure everything is being done right and I'm getting the most appropriate/best treatment. Finding one here (Vancouver Island, BC, Canada) was unsuccessful for me thus far. I'm willing to travel whatever distance to find/see someone who is very experienced with this. The closer the better of course! This forum is the best place for all info regarding any WG matters...... So I'm wondering where the best closest WG specialist is? Within Canada would be ideal but we are also very close to Seattle etc. Also, I know some of you have doctors who consult with WG specialists and I wonder, do I physically have to see the specialist first or is it something that can be done completely over the phone?

    THANK YOU, THANK YOU!!

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    We have several people on the forum who are from BC -- granted BC is half again larger than TX, but I think we have a few people from Vancouver and Victoria, so maybe they'll pop in. I haven't heard of any specific wegs specialists in Seattle, but Anne is very familiar with Seattle docs and I'm sure she'll pop in. Marta is from Jasper and I think she sees docs in Calgary. I will PM Marta to look at this post. Good luck!
    Last edited by vdub; 07-24-2014 at 03:33 PM.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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    Sorry Christina that you may be flaring again

    I hope you find the information and a great doctor that can help
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Here is a link to a list of vasculitis specialists provided by the Vasculitis Foundation. VF Medical Consultants

    Your local doc could consult with one of these docs to make sure you're being treated in accordance with the latest protocols. You could also arrange a visit to one of them if your doc and health insurance will provide a referral.

    The best known vasculitis centers in the States are (in no particular order) Cleveland Clinic, Mayo Clinic, and Johns Hopkins.

    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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    Quote Originally Posted by vdub View Post
    We have several people on the forum who are from BC -- granted BC is half again larger than TX, but I think we have a few people from Vancouver and Victoria, so maybe they'll pop in. I haven't heard of any specific wegs specialists in Seattle, but Anne is very familiar with Seattle docs and I'm sure she'll pop in. Marta is from Jasper and I think she sees docs in Calgary. I will PM Marta to look at this post. Good luck!
    I think Kirk (me2) is more familiar with Seattle docs than I am, as he goes to a team of them at the UW teaching hospital rheumatology clinic. He seems to recommend them highly. I've seen mention of other docs in the area here and on Facebook.... there is a Northwest Vasculitis Facebook group. I thought I'd heard of at least one good doc in BC from someone on here.... just can't remember who. I am actually getting by with a substandard local doc, maybe a good doc, but not a rheumy, and not for Wegs. So I'm not really one to talk.
    Anne, dx'ed April 2011

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    Thanks! My docs are doing a great job so I feel confident I'm getting good treatment. However there's questions that could probably be answered more thoroughly by someone who has seen more Weggies than I can count on my hand. 40years and I am my GP's first Wegeners patient, I am so glad to have him through all of this and I think he'd like to also have someone to thoroughly answer his questions as they arise too!

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    Would someone add a reply to this thread. It doesn't have to say anything special, just do a normal reply. I think I may have found a link between notifications and threads that don't open. Anyway, I'm testing it. Thanks, vw
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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    I've never done a 'normal reply' - this can be my first one

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    Thanks! Notifications aren't working for me. Not sure what is wrong. When I tried to turn notifications on, I noticed that I could no longer get into Phil's thread. All other threads are fine. It looks as if things may have reverted to the issues we were having several months ago. Thanks.
    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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    I just noticed I am not getting notifications either......hmm. Mr. Kahuna?
    Phil Berggren, dx 2003

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