New Member in Michigan

[Gac]

First of all....Thanks to all of you for the input. Secondly.....message rec'd....tomorrow, I will try to schedule an appt with Carol Langford at the Cleve Clinic

LOL-- I love it. We naggers don't waste a second!

Nice to meet you, Gac. I agree with everything said so far. Don't postpone starting with a Wegs specialist, even if things are going okay. All kidding aside, it's the most important thing you need to know.

[Sangye]

Whooya!

[JanW]

Chalk another one up for the naggers.

I don't like to bash other forums, because we are all out there trying to do the best we can, but let me just say this...I don't think there is another forum devoted to this disease that even comes close to providing what this one provides -- an unequivocal voice promoting the 'standard of care' for WG. I get frustrated when I go to other places and get into 'arguments' about whether WGs even need rheumys -- far less WG experts -- because someone likes their hometown doc, or ENT, or neph and people just say it's important to have a doc you 'feel comfortable with.' Or, people say that their rheumy treated WG a couple of times in the last decade and people say, "good for you!" I know I am far from the only person here who also frequently other discussion forums, but I never feel as comfortable offering advice at other places because I feel as though there will be much more pushback...like it's really a matter of opinion whether you need an expert in WG, vs. a statement of FACT.

So thank you Sangye, Jack, Phil, Elephant and all the others who say, "No, that's not good enough!" at the risk of pissing off a few (who may never return) but saving so many more.

[elephant]

Thanks to you too JanW you have brought a wealth of knowledge too re: stenosis. So many people on this forum who share their story help all of us " knowing that we are not alone."
We all need to stick together and make sure we all get the best care. This is the only forum I go on.

[pberggren1]

I have to agree with you JanW. But what about Dr. Specks at the Mayo Clinic? He is a Pulmonologist and is the main Wegs specialist there.

[Sangye]

Thanks, JanW. I totally agree. And like Elephant said, please include yourself on that list. Your knowledge and experience with stenosis is so important for people to hear, and you tell it like it is.

I always say that with a dx of active Wegs one has to hit the ground running. As someone who went from "Your case is quite severe but straightforward" to "You're in uncharted territory" within 3 weeks from dx, I know none of us can take the chance of having suboptimal care.