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Thread: Wegener's and Goodpasture's Syndrome

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    Question Wegener's and Goodpasture's Syndrome

    Anyone have both Wegener's and Goodpasture's Syndrome? My mom has both and it is hard to tell which is responding to meds or if either is going into remission.

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    Hi Tulip, welcome to the group. With a combo like that, please tell me you have a Vasculitis specialist overseeing her care.

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    I have heard of Goodpasture's Syndrome but I don't know what it is.

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    You can google it, Phil.

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    I was just lazy at that moment.

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    She is seeing Dr. Christopher Wise, a rheumatologist in Richmond, VA. Should we seek another opinion? She was in the hospital for about 6 weeks and is still quite ill

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    According to my Wegs doc, everyone with Wegs should be seeing a doctor who specializes in it. There are very few of them in the world. They see hundreds of patients with Wegs. The closest to you is Johns Hopkins in Baltimore, which is where I go. I can't emphasize the importance of seeing a Wegs doc asap, even if her case were straightforward (which is isn't) and even if things were going well.

    Here's their info. Please call them today. Appointments at the Johns Hopkins Vasculitis Center

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    Do you recommend anyone in particular at JH?

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    I see Dr Seo, but all the Wegs docs are awesome. You probably won't get to pick your own doc. When you submit all your records, they take about a week to review it all and then will set up an appt. It can take 6 weeks to get in, so start now. Sometimes they get you in sooner if they see you're more urgent. The VF symposium is coming up this summer, and Dr Seo is one of the speakers for it so that means he'll have less flexibility in his schedule.

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    I know nothing about Goodpasture's other than a quick Google, but it sounds very similar to Wegener's and equally as rare so I would suspect that you mom has one or the other, but not both. I would think that a clear diagnosis by a specialist would be essential.

    My first hospital stay after diagnosis was for around ten weeks and it took another five years to reach remission so it may be early days yet. What are your mother's symptoms?
    Last edited by Jack; 06-17-2010 at 04:54 AM.

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