Vasculitis Symposium - Do You Guys Questions

[JanW]

Hey, all --

As you know I'll be in Long Beach starting on Thursday. On Friday morning I'm going to the four-hour 'leadership conference' prior to the start of the symposium (apparently if you sign up on the website to do advocacy, you become a 'leader' -- I had no idea) and I'd like to know if any of you have any questions you would like me to pose to the docs. From what I have seen on the webcasts you submit your questions in writing in advance at the start of the seminars, so even if it doesn't affect me, I'll may be able to sneak some in. At the very least, I'll know what to listen out for.

You can look at the VF's website to get an idea of the different sessions. I won't be going to Ear, Renal or Eye seminars, because I don't have that kind of involvement. I will probably go to the one on pharmaceuticals. I will obviously be all over the stuff having to do with nose and throat.

I'm not taking a computer, but when my husband and kids join me on Sunday, I will definitely try to get to answering you then. My posts will be very short from the conference because I'll be on my phone.

ETA: Of course it should be Do You Guys HAVE questions!

[elephant]

My question is ," Why is it hard to control sinus/ear/ throat symptoms even when your in remission?"
Is Bactrim a good drug to control WG with sinus problems? Is it best to take daily?
I have a ton more questions but can't seem to articulate them.
Thanks JanW, much appreciated!

[Jack]

What causes the foot and lower leg pain that so many seem to suffer from?

[JanW]

Hey, Jack -- I'd love to know the answer to that as well. My doc seems to think it's a mystery, but I wonder what the other experts say. I'm anxiously waiting to see whether mine get better when P3 and c-ANCA are more normalized. I know that my inflammatory load is now normal but my feet still hurt!

These seminars are so specific I'll have to figure out which one suits this question the best!

[elephant]

Feel free to change my question to be more fitted.

[Sangye]

My question: When do the Wegs specialists sleep? I've done the math, and I don't think they do.

[JanW]

Ha! My question is -- why don't you have to wait long for an appointment. Lebovics wants to see me after the symposium and he's all like, "You can just call after you come back from CA, I'm not hard to see -- and I'll be around all around Labor Day."

These are not words you hear from a typical NYC doctor.

[Lightwarrior]

My question is, which one of them would like to relocate to sunny southern California???? I would easily be able to travel to San Diego or LA.

[Sangye]

Well now look what I've started. :D

I'm trying to think of something I really want to ask, but all I can think of are silly questions.

[elephant]

OK, naughty girls...need to get your writing pencils and start writing serious questions! I will be back to check on you! No bathroom passes! :)

[LisaMarie]

i want the question on the trach symptoms......wish I could go...oh you do not know how i wish i could go.....hope to be able to buy some of the lecture data if it is available...Dr Abdou will be there he is a short little white haired soft spoken man.....doubt he would recall me since I have only actually talked face to face once with him..but from my understanding he has an amazing mind when it comes to WG....so Jan enjoy ....be our sponge then share the wealth...wonder if The Doctor show or Dr Oz would ever do a special on WG ...lol I tried to watch them today it was hard .....Dr Ruth was on one of them......

[pberggren1]

I will try to think of some questions fast.

[drz]

What causes the foot and lower leg pain that so many seem to suffer from?

Hand cramps often go with leg cramps?

[Sangye]

Bing! Time's up! Put your pencils down. The Symposium has begun. :D

[elephant]

Too funny Sangye, you got me laughing. I was still writing one more question! :)