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HopeinTN
11-17-2011, 12:32 PM
I'm wondering if there are any other Weggies in the area. Take Care.

Al
11-17-2011, 03:59 PM
I'm wondering if there are any other Weggies in the area. Take Care.

Sorry, Katrina--I try to avoid Nashville because of the muggy summers and BRR-cold winters. I can tell you that Vanderbilt is a major place to study Goodpasture's Syndome. This is similar to MPA and BPA, in that it involves lungs and kidneys, though the autoantibodies are not usually of the ANCA kind (though many cases involve ANCA as well). The star researcher there is Billy Hudson. My guess is Dr. Hudson can put you in touch with other Weggies. And GP sufferers have pretty much the same issues as Weggies.

Al

HopeinTN
11-18-2011, 01:59 AM
Thanks Al. My rheumy is at Vanderbilt and diagnosed me along with a pulm dr., also at Vanderbilt. I'm mostly curious as to whether or not I need to, in addition to the rheumy at Vanderbilt, also need to see a Wegs specialist from the Vasculitis Foundation website. I just want to make sure I'm doing everything I can to stay ahead of this. Thoughts?

As always, thanks!

Al
11-18-2011, 05:19 AM
Thanks Al. My rheumy is at Vanderbilt and diagnosed me along with a pulm dr., also at Vanderbilt. I'm mostly curious as to whether or not I need to, in addition to the rheumy at Vanderbilt, also need to see a Wegs specialist from the Vasculitis Foundation website. I just want to make sure I'm doing everything I can to stay ahead of this. Thoughts?


For what it's worth, HK (well, you did ask!), I think that the main issue with doctors without much experience in ANCA diseases is that they don't know how to diagnose it. Once DX'd, however, treatment is down to a pretty bare set of principles (too bad about that; maybe it will get better in the years to come) that most anyone can follow. Still, there is a more to monitoring and dealing with the whole patient than meets the eye. I would say that if you like your present doctors, and they seem knowledgeable, then stick with them. However, any reputable doctor also encourages, or at least does not discourage second opinions, and would gladly refer you. So, if your insurance allows it, a consultation with either someone else at Vanderbilt (since they already have all your records), or, if you can travel, one of the big names in a major vasculitis hotbed (so to speak) would be informative. You are not that far from Chapel Hill, for example. It you feel like taking a trip over the mountains....As to your original question, you know there must be several weggies in your area, though finding them isn't always so easy, unless they announce themselves, like on this forum. Let us know how you do with all this!

AL

pberggren1
11-18-2011, 11:25 AM
Nothing beats a Wegs specialist. Dr. Falk at UNC is one of the best.