Vancouver, BC, Canada?

[moyan]

I always bemoan not having a specialist, i don't think there are any real specialists in Vancouver, only rheumys that treat a few weggies.

Hi Jolanta, Germaine knows about a supportgroup in Vnacouver and that would be a step in the right direction. She gave me an e-mailaddress, but unfortunatly that took me nowhere. Asked her to call me collect. Phil B also gave me a couple of # to people with WG. Still trying them. One is not active any more but the other one might be. Have had a bad month with spinning thoughts
Hope you are all right.

[Sangye]

Jolanta-- have you called or emailed the VF to ask for help? Many VF docs consult internationally.

[jola57]

moyan, I am here if you ever want to talk, just a phone call away anytime of the day or night. If I can't answer I will call you back. Keep well and positive

[moyan]

Thank you Jolanta, I am in a pickle right now, despite never having had a full remission, I think I am having a flair. Many small signs and lungdoc said yesterday that inflammation factor is up. And no reliable doc!
If we could find that supportgroup, maybe we could get a doc to become a wg specialist. I have an ENT app. Wed and will talk with him, he seems very knowledgable and has had or have some wg patients, more than 10.
Today is not a positive day, but there is one good thing about that: Tomorrow is gonna be better

[elephant]

Sorry to hear this Moyan. It's ok to have a not so good day, like you said tomorrow is gonna be better!

[moyan]

Hi elephant, thanks. I hope your worst turmoil is over and events have quieted down a bit. Actually, I am not sad any more, took some extra preds and got some immidiate energy. I always wonder how I would know if wg acts up, and now I know: It starts with I don't want to get up in the morning and then I leave the dishes spread on the counter! So now I have a visual alert

[Sangye]

Moyan, please ask your doc before taking extra pred. It's dangerous....

[jola57]

I GUESS WE ARE ALL HAVING A NOT PARTICULARILY GOOD DAY.
Happy Easter to all and may you have a bunny day tomorrow. I am picking up my son tomorrow, go to the Polish Church to bless the eggs (polish christian tradition even if its pagan) so I am hoping that tomorrow is definitely a better day.

[kulharv]

hi moyan,

i have a rhuemy, Dr Michael Ramsden, in new westminster right across from Royal Columbian Hospital. I have been going to him for 2 yrs now and was diagnosed 1 yr ago today with WG. He has been very good and on top of things with me. I also have a respritory specialtist in surrey, Grant McCormack. both docs are friends and i have been very happy with both of them. My ENT specialist.....well all
I can say is that I need a new one!

If you want I can forward the phone#'s for both docs. My WG has been active and I have just finished 4 rounds of RTX and am tapering off the prednisone from 50 mg and am currently at 35 mg.
My rhuemy has several patients with WG and is associate, I think his wife, also have several WG patients. From what I have seen, he nows about the treatments and gets the ball rolling asap. I was also was on a IVIG (immune globulin) treatment as I had bleeding in my lungs.

Let me know if I can help in any way.

thanks. Harvi

[Sangye]

Harvi, our dear Moyan passed away some time ago. She was a real treasure.