Central NY?

[newbie]

Taking advice and posting here to see if anyone else is located in CNY region.
If so, where/ whom do you go for treatment?
I am currently being treated by Dr. Hom Neupane at Upstate Medical Center.

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[JeanMarie]

Hi & Welcome Newbie, I'm downstate bur the Foundation lists an Upstate group in the newsletter. I don't know how active they are, but I hope this helps

[email protected] ([email protected])

[csjknits]

I am in Western New York (Buffalo). I actually don't have a rheumatologist at the moment. I am treated at Erie County Medical Center nephrology as my primary Wegener's doc, and I also have a local ENT and ophthalmologist. I have been extremely happy with my care if you are willing to drive a few hours.

[newbie]

Hi & Welcome Newbie, I'm downstate bur the Foundation lists an Upstate group in the newsletter. I don't know how active they are, but I hope this helps

[email protected] ([email protected])
JeanMarie, is this the email of someone to contact regarding the group?
Also, which newsletter did you find this in and how might I get a copy? I follow the Vasculitis Foundation on FB and their page but have never found anything except NYC contacts.
Thank you!

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[newbie]

I am in Western New York (Buffalo). I actually don't have a rheumatologist at the moment. I am treated at Erie County Medical Center nephrology as my primary Wegener's doc, and I also have a local ENT and ophthalmologist. I have been extremely happy with my care if you are willing to drive a few hours.
I am concerned that my rheumy isn't as knowledgeable as he would like to appear and my gp is no help at all. She washed her hand of me soon as dx and is not even willing to order tests or scans...now I'm stuck between the two of them when it comes to getting things done which means time wasted and extra travel anyway.
I have friends in Cleveland and am looking at getting there.

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[annekat]

Newbie, there are several other groups on Facebook that you can join and ask questions about docs, etc. You can search and find them on your own or PM me with the name you use on FB, and I'll request that you be added to the groups I'm on . You might find some better docs in your area that way. If you have friends in Cleveland you can stay with, that sounds like a great option. But it would also be nice to have a competent rheumy and other docs you need, closer to home.

[Pete]

Hey Newbie,

If you're disease activity is stave, you may need to go to Cleveland only a few times a year. I started out going every three months. I go twice a year now - generally in April and October to avoid the Great Lake Erie snow machine...

[JeanMarie]

Hi Newbie, Here's the foundations web site: Vasculitis Foundation (http://www.vasculitisfoundation.org/)

I thought all members automatically got the newsletter. I don't know which issue that was in, but they usually have a list of all the groups in each issue. If you are still having trouble I would call the foundation directly. I have found them to be very helpful in the past.

Be well!