Situation update

[delorisdoe]

So here is my question for those that reach remission. Do you ever feel the same again?

I was in remission for several years with only mini flares here and there. I found that it took at least a full year before I felt good enough that some days I forgot I even had wegeners. I felt better once I was off the drugs but not myself until later.

I am also 39 and I use that as one of my best excuses for why I dont feel good.

[Psyborg]

Saw the new doc yesterday and it went ok. He was right with me on leaving the Wegeners treatment plans to the experts. What I found interesting is that in my city of about 34000 there are two other Weggies running around. Makes me wish they knew more about what causes this, I'd love to compare notes, but of course the doctor isn't allowed to pass on that sort of info.

[vdub]

I have at least one other in my area. I have talked to him and his situation is totally different than mine....

[Nancy-S]

Bob, can you ask the dr to pass your contact info to the other two? They might love to talk to you. My friends friend was just dx. She contacted me for info.

[Psyborg]

I may do that next time I'm in to see him. Though I'm hoping I stay reasonably healthy for a while this time around

[Lightwarrior]

I may do that next time I'm in to see him. Though I'm hoping I stay reasonably healthy for a while this time around

I hope you stay reasonably healthy for a long time Bob.

[Sangye]

Glad your appointment with the new doc went well, Bob.

[Al]

Saw the new doc yesterday and it went ok. He was right with me on leaving the Wegeners treatment plans to the experts. What I found interesting is that in my city of about 34000 there are two other Weggies running around. Makes me wish they knew more about what causes this, I'd love to compare notes, but of course the doctor isn't allowed to pass on that sort of info.

A reason past ethical responsibility? Some doctors may be nervous about patients comparing notes!

I've heard of similar clusters if WG sufferers, though I don't know if they are just a statistical blip or if they mean more. In any case, Bob, we're all rooting for you (and the rest of us!) to function "normally" for a long time!

Al

[Natalie]

healthfor a long time Bob I wish for you . ! And I hope you do get in-contact with the other weggies , I think its good to meet up