Wegeners Special Interest Doctors

[flana]

Hi, I noticed that there isn't any thread on WG SIG Doctors. I am in the Sacramento area, and was looking for WG SIG doctor in the Stanford area. I was told at the hospital that there was a special interest group at Stanfords that deal with WG patients day in and out...

Anyone have any pointers?

[Terri]

Sorry, don't know what to tell you about SiG Dr's
I'm from the eastern part of the country but you could check with the Vasculitis Foundation. They could help you find what you need or at least head you in the right direction.
Keep us posted as to what info you can find. We're always interested in news of any kind.
Hope things are well you you today.

[marywg]

My husband is seen at UCSF Rheumatology Department. We have been very happy under the care of Dr. Sharon Chung who trained at the Cleveland Clinic. I haven't heard anything about Stanford but I would be interested if you find anything out.

[flana]

Sorry, don't know what to tell you about SiG Dr's
I'm from the eastern part of the country but you could check with the Vasculitis Foundation. They could help you find what you need or at least head you in the right direction.
Keep us posted as to what info you can find. We're always interested in news of any kind.
Hope things are well you you today.

My primary care physician researched and submitted my case referral to Stanford's this morning for a review. Awaiting a call from them... will keep the thread posted as and when i have any updates.

Does anyone know if there are any Doctors who are members of this forum? Would be real nice to have them around for comments etc

[Doug]

Good luck with the search. There may be others in your area who'd be interested in what you find out. As for doctors, I agree with you. Sangye is a chiropractor. Others may be hiding in the membership, waiting to be "outed"! I would guess that they would be hesitant to give medical advise, however. To that end, anything any of us shares about our own treatment should be regarded as something to review with your doctor or doctors. I am a retired quality analyst, for example. I know a lot about WG and me, but everyone on this forum has a different experience with the dang disease. Somewhere in every posting is a little bit of information, a bit of insight, a difference of perspective that reflects (mostly) a patient's point of view. Think of this more as a patient's forum.

[jola57]

Very well put Doug, and its true, while docs may gaze at our forum, they will not offer advice for fear of malpractice. Unfortunately any comments they make as docs fall under professional advice even when given in a friendly chatter. Further when combined we know more of our symptoms than docs anyway and will be the first to know if there are any new breakthroughs.

[flana]

Very well put Doug, and its true, while docs may gaze at our forum, they will not offer advice for fear of malpractice. Unfortunately any comments they make as docs fall under professional advice even when given in a friendly chatter. Further when combined we know more of our symptoms than docs anyway and will be the first to know if there are any new breakthroughs.

Good luck with the search. There may be others in your area who'd be interested in what you find out. As for doctors, I agree with you. Sangye is a chiropractor. Others may be hiding in the membership, waiting to be "outed"! I would guess that they would be hesitant to give medical advise, however. To that end, anything any of us shares about our own treatment should be regarded as something to review with your doctor or doctors. I am a retired quality analyst, for example. I know a lot about WG and me, but everyone on this forum has a different experience with the dang disease. Somewhere in every posting is a little bit of information, a bit of insight, a difference of perspective that reflects (mostly) a patient's point of view. Think of this more as a patient's forum.

Thanks for that perspective guys... Never thought of it that way. But i guess the way things are I would have done the same if i were a Doctor. There are people of all sorts out to get you...

Anyways not sure if I should start a new thread or just continue on this one... But someone slap my wrist if this needs to be a new thread...

So I had been doing fairly good all this while up until a couple weeks ago, when my LFTs (Liver Function panel) went crazy with ALT peaking at 1500. It started to climb down after a week or so. However it was scary. However my Rheumo needed an explanation. I saw the GI by the time ALT was around 1300 and he was puzzled, Hepatatic Function panel was negative, acetamenophin was -ve. The only explanation was Bactrim or some viral infection. So he suggested discontinuing Bactrim. A week or so later (7/6/09) ALT was at 500. We still do not have an explanation. I don't think we can really blame Bactrim since the trend is not really following Bactrim.

Anyways, I have started getting bleeding again from nose since about a week. And someone please tell me if I am right on my theory... High level of liver enzymes started rejecting Cytoxan and Predniosone, and WG symptoms started flaring up. Does that make sense to anyone? My Rheumo does not agree but the Ottolaryngologist does.