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Thread: "I Don't Know" - Notes from the VF Symposium

  1. #11
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    So Janw, did they say why it is primarily Rheumys who handle Wegs. Obviously there are quite a few, Nephs, Pulmos, Internists, and Immunoligists as well that are the quarterbacks in Wegs care. My new Wegs doc, who has a lot of Wegs experience back in the UK, is a Nephrologist and Internist. He is very good. I am going to print off your first post on this thread and give it to him to read and see what he says.

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    Phil, rheumys would be the ones overseeing care for any autoimmune disease. They're trained to look at a wide range of signs/symptoms, as opposed to an organ specialist who focuses on only that area.

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    My new Neph/Internist definitely looks at the big picture.

    My previous Rheumy just overlooked my coughing up of blood but my new Neph/Internist looked into that right away and got results. My Rheumy just sat on that and did nothing. But I have learned from this as well. If you are coughing up blood have many sputum samples sent in for many different tests to be stained and cultured.

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    Default Thank you Jan

    I'm sitting here with tears running down my face just reading about these Dr's.
    Since April, I've heard more than one "I don't knows" from my rheumy . At my July appt. I just said to him, something has to be done. He told me to see Dr. Gary Hoffman at the Cleveland Clinic. I've been putting it off but now the way you have described these Dr's and Dr. Hoffman was one of them....I'm calling first thing in the morning to see if I can get in.
    Thank you again for what you have posted so far. Looking forward to more posts to come.

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    Hoffman seems terrific and he was definitely a mentor to Langford and Lebovics, just to name two that passed through his clinic back in the day. He also just joined the board of the VF.

    You may want to consider going for Langford, however, who is younger. I'm not sure of how old you are, but it's somewhat ideal if you have vasculitis to be of roughly the same generation or older than your doctor. Your ideal relationship will last for your entire life. Both Hoffman and Abdou (sp?) are older gentlemen, closer to retirement than not.

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    Phil, medicine is organized differently in different countries and I do believe that immunologists in Europe are more like rheumys here. Not sure about Canada. There was one clinician who was an immunologist at Boston and had been recruited there by Merkel (rheumy) and they work as a team. But Sangye is right, and indeed, these guys would say it -- ideally, the rheumy isn't going to look up your nose and tell you that you are havng a flare, and your neph won't be trying to figure out your bloodwork except as it relates to your kidneys. Please understand that this has nothing to do at all with qualifications or quality of any particular doc but merely than in diseases with so many complications, each 'system' needs its own expert.

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    I believe that our forum and its members have a great deal to offer to the VF. Does anyone know how we could establish a connection? Assuming that their web site is visited by doctors, even just including a link on there back to the Forum would be useful.
    Jack

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    Quote Originally Posted by JanW View Post
    Hoffman seems terrific and he was definitely a mentor to Langford and Lebovics, just to name two that passed through his clinic back in the day. He also just joined the board of the VF.

    You may want to consider going for Langford, however, who is younger. I'm not sure of how old you are, but it's somewhat ideal if you have vasculitis to be of roughly the same generation or older than your doctor. Your ideal relationship will last for your entire life. Both Hoffman and Abdou (sp?) are older gentlemen, closer to retirement than not.
    Did you get to hear Dr Abdou's speech...he is an older gentleman ...very wise but as you said close to retirement or doing more research than hands on care...atleast that is the impression at the his office.....zi am hoping the younger doc I have will listen and follow thru.....Did they discuss heart envolvement at all?
    Want to see a miracle? Plant a word of love heartdeep in a person's life. Nuture it with a smile and a prayer and watch what happens...Never underestimate the power of the seed!

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    Quote Originally Posted by Jack View Post
    I believe that our forum and its members have a great deal to offer to the VF. Does anyone know how we could establish a connection? Assuming that their web site is visited by doctors, even just including a link on there back to the Forum would be useful.
    I would assume that would be up to Andrew to address?

    I do agree Jack, that this forum has much to offer. We have many on this site with broad experience, and excellent navigating skills. I was originally directed to a Yahoo support group when my daughter was first diagnosed, but found this group only recently.

    I think it is as simple as calling or e-mailing 'Joyce,' the famously nice lady at the Vasculitis Foundation, and telling her about this group. She will be recovering from hosting the symposium, so one might want to give her a bit of time before making contact.

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    Yes. I don't know how eager they are to link to anything--as a grassroots organization they listen very carefully to what their members say and when I went to the leadership meetings (prior to the conference; these people are all members of the organization), I found some to be openly resistance to any kind of internet communication, even in terms of getting their own message out. Many of them are older -- it seemed to me to be more a generational position than a defensible one. Certainly the membership here has the kind of view that VF would like to promote -- we are well informed. I don't see the kind of clearly wrong information that I have seen posted at other places.

    As to the heart, VF involves 15 diseases, some of which are more likely to involve the heart, so they didn't really focus on it in WG, except to remind people that WG can effect any organ.
    Last edited by JanW; 08-03-2010 at 01:22 AM.

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