New to WG and scared to death...help

[LisaMarie]

I have another question...Does anyone get Left shoulder joint, neck , jaw and chest pain all at the same time that decreases if you hold your breathe....2 yrs ago the cardiologist said it was arterial spasms...wondering if it could be WG...had an episode on Sunday that lasted 20 minutes...Should I ask my WG doc?...It is scary to experience but the cardio said it was not a heart attack...so I tend to deal with them ...they happen about ever 3 -6 months for no reason.....

[LisaMarie]

Look like we both come from strong stubborn stock as my grandmother use to say....I will try to slow down and listen...and will pray you can too......Thanks for letting me know I am not alone

[Sangye]

I have another question...Does anyone get Left shoulder joint, neck , jaw and chest pain all at the same time that decreases if you hold your breathe....2 yrs ago the cardiologist said it was arterial spasms...wondering if it could be WG...had an episode on Sunday that lasted 20 minutes...Should I ask my WG doc?...It is scary to experience but the cardio said it was not a heart attack...so I tend to deal with them ...they happen about ever 3 -6 months for no reason.....

Has your Wegs doc done an echocardiogram recently? Heart involvement with Wegs is not common, but it is silent. We just lost a member to it a couple weeks ago. He supposedly only had sinus involvement but Wegs was destroying his heart. You should have an echo at least annually, and more often if you have unusual symptoms or concerns.

[LisaMarie]

Echo done last fall...had both a regular and a bubble echo....will see if they can do it again.....thanks
I feel like I need to know more than I do...and at the same time trying not to over analysis things ...ughh

[talentx7]

I really hope that the stat about living 5 years with WG is VERY VERY old. I wonder if WG is not all that uncommon anymore. There seems to be alot of us out there, and more and more are being diagnoised. Hopefully that will mean better treatment and (holding my breathe) a cure.

[Sangye]

The 5-year survival rate is a standard way of describing serious illnesses. It doesn't mean that no one survives after 5 years.
Five-year survival rate - Wikipedia, the free encyclopedia

I wish we could get good data on the real prevalence of Wegs. The number I've usually seen is about 500 new cases each year in the US.

[ranpar01]

The 5-year survival rate is a standard way of describing serious illnesses. It doesn't mean that no one survives after 5 years.
Five-year survival rate - Wikipedia, the free encyclopedia

I wish we could get good data on the real prevalence of Wegs. The number I've usually seen is about 500 new cases each year in the US.

I've seen the 5 year figure as well and agree that it's a stock number that get's thrown around for a lot of serious diseases. I've also read that sympton free remission stretches can be up to 20 years. My Dad was symptom free for many years before this last flare-up he had. As for prevalance, I'd love to see those figures as well but that might be very tricky because WG is (in my opinion) not as rare as people think - it's just RARELY DIAGNOSED. That's why forums like this and others that try to raise awareness are so important.

LisaMarie - I'm glad you found this forum and are getting some answers. This is a great group of people.

[LisaMarie]

Trust me I am praising God I found this web site/support group.....It is keeping me sane for now....I just want answers and am learning I may not get them and learn to accept it....Got to watch my youngest play ball tonight....He did great and they won....yeah!!!!.i don't want to miss any of this and it just gets fustrating ...He wanted to swim with me afterwards but i was too wiped out from work and watching the game in the heat and all...so he gave me a rain check....okay enough complaining it could be so much worse....have a great night

[Nancy]

Hey Lisa Marie -
read your post here - I saw you mention KU Med... I live in Topeka, KS and see Dr Abdou.... See if anyone has any issues with changing to him... He is THE one that you want to see.. I am also a nurse practitioner - so yes, understand the work to maintain kids and bills... I have had Wegener's for 14+ years and would be happy to help in any way that I can.... Waiting with crossed fingers for the RTX same as you.... Dr Abdou specializes in Wegener's and actually pursues the information and attends all conferences, etc.... Talk with you soon...

[LisaMarie]

i was told he is not accepting any new patients....plan on asking again on my next visit.Dr Scott assured me he will consult on my case. Genentech denied me even though i make less money now due to declining required a change in positions at mu hospital...working on an appeal..just pray everyday God gives me strength and patience....talk to u soon..glad to know someone close to home see Dr Abdou