heart breaking story, posting for a friend. can we help her ? please ?

[annekat]

Oh, and I also was told, for real, put nothing in you're ears, except you're elbow. Nothing should go in there, except maybe a wash, type stuff... I look at people with the cue tips, and think, No! Don't due it... Outside around ear, ok, but not inside... Me!!!... Xox...!!!3sss...

Everyone has been told that. And everyone knows that a lot of people do it anyway, though not everyone does it, some people are good..

[debra]

The I, above goes with the rest of the word... Oh, boy... Me... Xox...

[annekat]

Do! Not due, man cut me a break, will ya? Anne, thanks, ya could be causing ani nfection... But ya know what??? Nothing is gonna work for any of this, till someone, TREAYs ignore the y, treats me!!! Me! Untreated!!! Xox...

My "ear infection" went away 2.5 years before I was treated. A lot of stuff, mainly sinus infections, came and went before I was treated. They were still caused by Wegs. That's all I'm saying. I should have been treated a lot earlier and you should be treated! YES! and SOON! I never said otherwise. But there are still things that can be done to alleviate pain and symptoms, to quell infections, etc, before some doc decides he is actually going to treat you! We are all waiting for that to happen! But don't just let an ear infection fester, especially if you think it is WG related, if you can take some measures against it. Maybe seeing a doc about this would be part of convincing him you really do have WG! Docs should know by now that an ear infection in a middle aged adult could easily be a sign of WG. Especially ENTs and rheumies should know this. I know it is hard to find the doc who will listen to you and take you seriously, but you have to keep trying.

[debra]

I can dig it, Anne... I'll get there, trust me. Just taking longer than it should have, cause I'm dealing with complete, idiots! Thanks, Anne, this was all helpful... I mean zebra, ya know? Just nuts... Me! Xox...

[annekat]

I can dig it, Anne... I'll get there, trust me. Just taking longer than it should have, cause I'm dealing with complete, idiots! Thanks, Anne, this was all helpful... I mean zebra, ya know? Just nuts... Me! Xox...

It's cool, just wanted you to know some of my history of being untreated, didn't take me as long as you, every situation is different, you can still do it! In the meantime, you can still be treated for what seem to be lesser things, like ear infections, and some smart doc may take notice! I went into the hospital overnight for what seemed like pneumonia, and a smart doc there, with the help of a CT scan, guessed it correctly, right over the heads of my pulmy and ENT. I don't want your nose to collapse all the way, like mine did, but if it does, that should be another dead giveaway.

[debra]

Anne, how long did you're nose take? Speaking, of, just got a nose bleed, only slight, but never had one in my life!!! Someone please come here and shoot me! You can use mine! Anne, my septum is deaviated, idiot didn't say why this happened, right when I got sick? And there's a slight change in the shape, that I notice!!! That's all that matters! It's my nose! It seems smaller? Which isn't great, because it was already small! I don't want it, to change more... I also wanted to keep my bottom teeth, with matching gums, with matching bone!!! Thank goodness, all my top are there, and my mouth is small! Some would argue, this... Me! Xox...

[annekat]

Anne, how long did you're nose take? Speaking, of, just got a nose bleed, only slight, but never had one in my life!!! Someone please come here and shoot me! You can use mine! Anne, my septum is deaviated, idiot didn't say why this happened, right when I got sick? And there's a slight change in the shape, that I notice!!! That's all that matters! It's my nose! It seems smaller? Which isn't great, because it was already small! I don't want it, to change more... I also wanted to keep my bottom teeth, with matching gums, with matching bone!!! Thank goodness, all my top are there, and my mouth is small! Some would argue, this... Me! Xox...

I don't know how long it took, I just noticed it one day. I think it happened fast, and I never felt pain. It might have been around the time of my dx, but I don't know if any doctors saw it and didn't say anything, or what. I wear glasses, which kind of hides it. Blood in the nose could mean something. A lot of people have deviated septums, my whole family has them, it is common, but if you didn't have it before, then WG probably caused it. We'd have to compare noses, I guess, but I have seen saddle noses that are like mine and some that are pretty different. Depends on original shape of nose. Some are not that bad, like Alysia's. Mine is worst with glasses off and from the side. It does look smaller, where it was just medium sized. I have a small mouth, too. But I have top and bottom teeth and gums. I didn't know you still had top teeth. That is something, anyway. But you have lost too much. I hope the pulmy you are going to will recognize some of these other signs and have some knowledge of WG and somehow get you to the right person for treatment. He could even treat you himself if he thinks you have it. But best would be someone close to being a WG specialist, hiding out somewhere in the woods of NH. Not trying to be funny. There just has to be someone somewhere who will take you seriously. If only we were doctors and we could do it ourselves. XXOOXXOO Gonna go feed cat now.

[debra]

Anne, thank you, very much... Ya, lost way to much... Could have been stopped... Thank you, God my top teeth seem strong and no loss up there, but the gums look weird. Strawberry, gums, its called... Glad, now for the small mouth. Well, looks wise anyway! Ciao, Anne... I love you... Me!... Xox...

[annekat]

Anne, thank you, very much... Ya, lost way to much... Could have been stopped... Thank you, God my top teeth seem strong and no loss up there, but the gums look weird. Strawberry, gums, its called... Glad, now for the small mouth. Well, looks wise anyway! Ciao, Anne... I love you... Me!... Xox...

Strawberry gums could easily be Wegs. I had a little of that until I got treated. Remember, Birdie got his diagnosis through a gum biopsy. That sounds like a way to go with the strawberry gums. Good luck, and good night. XXOOXXOO

[debra]

Yup. That's were I was headed, a gum biopsy, but my doc, thought I should try the ent, dude!!! So against my gut instinct I did! And very sorry, now... Wegeners, all the way down town... I mean, just come on! Hey Anne, there was just a shooting in Seattle, near a place called the jungle? Anywhere near you? Good night, Anne and thanks again... Me! Xox...Xox...Xox...