Newly Diagnosed

[Geraldine 1]

Hi Sangye,

I am not sure why I am not on a immunosuppressant but I am calling the Dr. today and will ask. I am being treated by a pulmonoligist Dr. L. DePalo he is affilliated with Mt. Sinai in New York City where I was finally diagnosed by him. He has treated others with Wegs but I would appreciate any help with finding a Wegs specialist though. It is difficult and overwhelming to know who to go with.

hope you have a great day, thanks

[elephant]

Geraldine go the the Vasculitis Foundation. They have a list of WG specialist on that web site. I go to Carol Langford, she is at the Cleveland Clinic in Ohio. Wonderful person and is one of the best Wg around. I drove 10 hours to see her. It is worth the trip. Felt great after seeing her and knowing that I was on the right medicines.

[Sangye]

Geraldine, I suggest the VF list also. If a doctor isn't on that list, then s/he is not a Wegs specialist. I also encourage you to travel if you must. Wegs is a life-threatening disease that is sneaky and can do tons of silent damage. There's not a lot of wiggle room with Wegs--sometimes none at all.

There are 3 ways to use the VF docs (ranked from ideal to least ideal) :
1) VF doc is your main doc. You travel to see them for all your Wegs care. (Usually only see them every 2-3 months until things are very stable)

2) VF doc is your main doc, but you travel to see them infrequently (once or twice a year). S/he coordinates your care. Local docs follow their instructions and take care of day to day issues.

3) Local doc is your main doc. S/he consults (for free) with VF doc, and the VF doc gives recommendations for your care. You don't actually see the VF doc. This requires a local doc who is open to taking instructions from another doc and carrying them out without changing them, as well as someone who is skilled enough to take care of regular issues. This is the least desirable option--lots of ways for mistakes to happen, you don't get to ask the VF doc questions, and you're always wondering what is really being communicated since you're not in on the discussion.

The big difference between #2 and #3 is that in #2 you actually meet with the VF doc. They get invaluable information just by talking to you, examining you and seeing you. It's also the only way you get to ask them questions and really discuss your case. HUGE.

From your description, you appear to have quite active disease that appears to be seriously under-treated, I suggest you get the ball rolling today. It can take weeks to get an appointment. And remember, any immunosuppressant that they start will not even begin to be effective for a month.