I'm New - Limited Wegener's Disease

[Sangye]

LOL It's so nice to meet you again, Brooke. Always a delight.

[Psyborg]

Hi Brooke,

You post came up when I did a search for wegener's and columbus, ohio. Do you live in Columbus? I live here and so does my second cousin, who was just diagnosed with Wegener's. She is in a lot of pain and I believe her doctor told her she only had a year to live. I am very concerned about this. I wondered if you could tell me who your doctor is, and maybe she can get a second opinion.

Thanks,
Suzanne

Suzanne,

I live in Delaware, Oh, and I'll echo what others are saying. Have your cousin go to the Cleveland Clinic. I see Dr Villa-Forte and she's fantastic. They have a bunch of specialists and should be able to see her fairly soon. I have no idea why someone would say she has only a year to live, that's horrid. that said she may feel like it's the case if she's in the middle of a Flair and doesn't understand what is happening.

The group at the CC she needs is:
Orthopaedic and Rheumatologic Institute
Rheumatic and Immunologic Diseases
800-223-2273

Thanks,
Bob

[Brooke]

Thanks for the welcome again!! So great to be here

[Suzanne Patzer]

Sorry for the confusion. I got a call last week from my mother telling me my cousin was "dying" and had been diagnosed with Wegener's. My cousin was apparently told she may have a year to live and was making her will and trying to figure out the custody of her daughter. I have not had a chance to talk to my cousin myself yet. I was searching on the internet to find out about wegener's. I did a Google search on "Wegener's and Columbus, Ohio," and for some reason Brooke's entry came up, so I thought she was from Columbus. From what I read in this forum and on other sites, I suspected that my cousin was being told something extreme. My cousin is a breast cancer survivor, but I don't think that has a direct relationship to what is going on with her now. Her symptoms sound like Wegener's. I thank everyone for their input and hope to inform my aunt and cousin what has been recommended.

[elephant]

Hi Suzanne, let us know how your cousin is doing. I go to Cleveland Clinic in OHio to see a WG specialist. We are here for you and your family.

[dunkie2202]

Sorry for the confusion. I got a call last week from my mother telling me my cousin was "dying" and had been diagnosed with Wegener's. My cousin was apparently told she may have a year to live and was making her will and trying to figure out the custody of her daughter. I have not had a chance to talk to my cousin myself yet. I was searching on the internet to find out about wegener's. I did a Google search on "Wegener's and Columbus, Ohio," and for some reason Brooke's entry came up, so I thought she was from Columbus. From what I read in this forum and on other sites, I suspected that my cousin was being told something extreme. My cousin is a breast cancer survivor, but I don't think that has a direct relationship to what is going on with her now. Her symptoms sound like Wegener's. I thank everyone for their input and hope to inform my aunt and cousin what has been recommended.

I feel very deeply for your cousin Suzanne. As if the poor girl hadn't been through enough with breast cancer, she had to be attacked with WG. Please tell her to find another Dr, someone who knows what they are doing. We wish her the best of luck. Suzanne you will find a lot of information here and the people are very kind and caring. take care

[dunkie2202]

LOL It's so nice to meet you again, Brooke. Always a delight.

bahahahahahahahaha