ENT docs !

[annekat]

Nice pic, Debra! So you are a motorcycle mama!

[Barbara N]

Me, too. And I love you, too.

Me too and I am so happy to know you all and I love you too. We are so lucky , thank you -Andrew, again for getting us together and keeping us together. You can just feel how much happier we all are when you read this forum.

[Debbie C]

I just read the thread ,I don't know how I missed it before. But I am SOOO happy you finally got a good ent And hopefully like he said the adhesions (which is a word in English also ) will go away like the other side. Aren't you supposed to get more RTX again soon. I know your sad about the news but look at it this way ...it could be worse and he could have been another bad dr. so you have alot to be happy for
I went to my ent office today for my hearing and balance check. My hearing is still the same and has not gotten worse but my balance is way off. I never had that test before and 9 hrs later I am still dizzy. They blow cold air into your ear ,have you look at a certain spot in the room,then cover your eyes and you have to try to keep your mind fixed where that spot was while they ask you questions like name states,or fruits or count backwords from 100 by 3. Then they do the other ear. After that they use warm air.I had to take a break before she did my one ear for the last time . I was so dizzy I thought I was going to be sick. And she even said that I was way on top of the chart and made the last one shorter.She said she never tested anyone that high on the chart !!! But she was really nice,she got me some crackers and water and made me sit back in a recliner for about 20 min. until I felt good enough to go. Next week I go to the optomologist,a nueroglogist and back to the ent for the results and game plan . Fun week ahead of me .

[Debbie C]

Nice pic, Debra! So you are a motorcycle mama!

Thanks,Andrew was able to get it posted for me,I don't know what I did wrong. But yea I like riding. I was thinking about buying a scooter but my feet won't touch the ground. I am looking at this rebel. But than I'm thinking my boyfriend has 3 harley's and a chopper..I really don't need to waste my money on that when I could buy shoes or clothes or something else !!!!

[Alysia]

Hi Debra.
thanks for your encouregement.
I never heard of that test you did. it sounds aching
I hope the results of all you tests will come good.
I'm going to have my next rtx at the end of september or so.

[Alysia]

It seems there are not many known weggies in Israel. I hope they are not dying somewhere without being dx.
.

I went to the cinema with my children. when the movie started it was too loud (my ears really aching when there is high volume), so I ask the girl who worked there to make it less loud.
even in the dark cinema I could see without any doubt: the girl has saddle nose !
I can recognize it. her's was worst then mine. when she returned (after lowering the volume) I took her aside and asked : do you have wegener ?
she was surprised and said: yes, I do. I explained to her that I saw it by her nose and I showed her my nose.
and then we talked. (she is the first weggie I meet in Israel I already meet you, my dear friends).
she is 23 yo and it turns out that for at least in the past 3 years her nose was deteriorating and she passed surgeries. for 2 years no doc thought it is WG.
how can't they see that such a nose is like "stamp" of WG ?!
after 2 years of problems with nose she got kidney involvement and only then came the dx. then she got RTX and she is ok now.
we changed phone numbers and I told her about the forum but she said she will not come here (I didnt ask why, maybe because of her english)
I hugged her and I told her I'm so happy to find her.
I think she was pleased to see me, and also not exactly knowing what to do with this talkative emotional lady (me)

[annekat]

Alysia, that is touching experience you had, sort of heartbreaking and exciting at the same time. My heart aches for what that young woman went through with her nose and the delayed diagnosis. It is about time doctors all over the world get a clue about Wegener's. There are plenty that do have the appropriate awareness of it, and apparently plenty who are totally in the dark. If she has to be a Weggie, I'm glad you met her.

[pberggren1]

That is so nice of you Alysia to reach out like that. I'm sure you made a very good impression on her.

[mishb]

Wow, good on you Alysia

I would have been too scared to approach her, I would feel that I was sort of embarrassing the poor girl. You have done a good thing, and I should learn from you.
Were you her first "encounter" as well, or does she know of others?


Is the saddle nose only WG appropriate or can it also happen with other diseases/conditions?

[pberggren1]

One of the first things I do when I walk into a waiting room at a clinic or hospital is shout out: WHO HERE HAS VASCULITIS?