looking for new specialist in PHX, AZ?

[sammers]

I was diagnosed in Feb. this year, and as far as I can tell I am very lucky because the Wegenes was found before any serious damage was done. That being said... I still have this serious illness, and it still could kill me!

My issues is I need a different specialist out here in Phx because the one doc I have been referred to is just way too busy to make me feel like she even knows my name. I feel like a number; I am supposed to be starting Cytoxan treatments soon, and the doc doesnt seem to have the time to talk with me.

if you are an AZ local and can share some names I would be thankful.

Sammers

[pberggren1]

Lightwarrior may be able to help you out. I know that the docs as Mayo in Arizona are not considered Wegs specialists. I would contact the Vasculitis Foundation just to make sure and ask for docs listed in your area.

[pberggren1]

I just asked Lightwarrior if she know of any Wegs Specialists in or around Phoenix and she said she didn't know of any. She is in Yuma.

[Sangye]

Hi Sammers, welcome to the group! Glad they dx'ed the Wegs before you had more damage. I lived in AZ until late '08 and there are no Wegs specialists there. After having inadequate care from my local docs in Flagstaff, I started at Mayo Scottsdale. The problem is that they are not Wegs specialists there. Check out the suggestions on this thread to find help.
http://www.wegeners-granulomatosis.c...need-know.html

[sammers]

thank you for all the info... I have an apointment today with my rheumatologist. I am bringing my husband for support as I tend to get emotional and feel overwhelmed quite easily lately (prednisone!!). I feel confident in her wegener's background, but I haven't really felt like she has the time to comit to me. Her office is always so busy, and it is impossible to get an appointment without about six week advanced planning.

I started looking into help through the vasculitis foundation... I'll have to see how that pans out after that it is Mayo Clinic... I hope they work with my my health insurance.

[Jack]

I feel very lucky!

I paid a visit to my clinic last week because I had not been for quite a while due to all the other problems I've been having. All I had to do was ring up and I was told to just call in any time and they would take my usual bloods and have a chat. If I wanted to see my specialist, I would have to wait until Friday, but because I had no new problems the visit took about 15 minutes!

[Lightwarrior]

Sammers,
Welcome to our group. Unfortunetly there are no Wegs specialists in Arizona. You will find that most of the docs learned about Wegs in medical school and maybe....they have seen a few patients. Your best bet if you cannot get to a center that has a Weg specialist is to find a Rheumatologist that you trust and who will consult with a Weg specialist. The vasculitis foundation is the place to start. This group is excellent support and will keep you sane. I live in Yuma and was diagnosed in December 2009.

[JanW]

I feel like you, Jack. I can get in with my specialists whenever and my ENTs visits are 45 minutes while my rheumys are an hour - most of that time spent talking. It is clear in both offices that wegs patients go to the head of the line always.

The closest center to you is the newly established one at the University of Utah; we learned about it at the VF symposium this past week.

[Sangye]

Jan, can you start a thread that lists all the centers?

[JanW]

I will as soon as i get on a computer rather than iPhone.