Hello, I am new here.

[CanadaGuy]

Hello,
I am new here. I decided to join this group because I have some health problems that look a lot like WG symptoms. I have been legally blind for 30 years. I used to have a lot of nosebleeds when I was younger, however, I only get bleeding cysts near my ear and neck. I have had headaches for several decades. But now I'm also get various pains around my nose and skull. I also have joint pain and sore feet and fingers. I have problems with swallowing quite often and I get short of breath often. I also have GERD and other stomach and intestinal tract problems. I often have ear problems and I have hearing loss. At least I have a kidney function levels of 74 GFR. I have cysts on my arms, legs and stomach area.

My ENT said that my nose was causing my ear problems. I didn't know what to ask him. He didn't want to do anything more than a CT scan of my head and do a hearing test in about a year.

No one seems that concerned about what is going on with me with my other symptoms.


I am in the Boise, Idaho area.

[Pete]

Hi Canadaguy,

"Welcome" to the club. Here is a link to a list of Vasculitis doctors: Vasculitis Foundation » VF Medical Consultants (http://m.vasculitisfoundation.org/?task=get&ihash=ccd56128ea&url=http%3A%2F%2Fwww.vasculitisfoundation.org%2Fmc m_resources%2Fmedical-consultants%2F)

I think there is at least one specialist in Salt Lake City who might be able to help you. It doesn't seem that your current doc is helping much. Probably past time to get competent care.

Keep us informed about your progress. Feel free to ask questions or just vent. Good luck!!

[annekat]

Welcome, Canadaguy. Yes, there is a vasculitis clinic, with at least one WG specialist, at the Univ. of Utah, and you will find it on that list that Pete just linked to. I don't know how far that is from Boise, but vasculitis clinics in the west are few and far between. Here is the link to another site which lists docs recommended by patients by country or state, and has a list of clinics and centers: http://www.vasculitispan.org/ . I hope you don't have WG, but you need to find out what you do have! Your ENT sounds a little casual about it all. Most WG patients see a rheumatologist as their main WG doc, with ENTs and such on the side. But not everyone has easy access to real specialists. I also heard there is a good doc in Spokane, don't remember if he was a rheumy, nephrologist, or something else..... someone posted about him recently but I don't remember his name... you could try a search on that. Best of luck to you, and keep in touch!

[vdub]

You are very lucky to be close to SLC. The UofU Vasc Center is excellent! I went there for confirmation of gpa about 6 years ago. The individual you want to get a referral to is Dr Curry Koening. He is wonderful and will put you through a couple days of tests looking for an answer. His phone number should be on the web site.