ent visit

[Debbie C]

I went the other day to see my ent because my nose and forehead have been getting really cold all the time. Well when he came into the office he had a intern following him that day he he told him I have wg. Well to my surprise he knew what is was and said it now goes by gpa,needless to say I was impressed and I told him I was surprised he knew what it was. He told me that they are teaching alot about it in school and ask my story about it and he was excited to meet someone you has it but said he was sorry I did. But anyway the dr said I had no holes or perferation in my nose but wanted me to have a ct scan of my sinus to make sure my nose wasn't collapsing. So what botheres me on the script for the scan he wrote to check for cronic sinisitis. They called me the following day and said my sinuses were fine....that wasn't the issue,although I wasn't sure if I had a sinus infection. So I had the hosp send a disc and the report to CC for her to check out and I have to go back and see the ent on March 18th and bring the disc. So I still don't know what's causing it. WG ???

[Pete]

The medical diagnostic wheels grind slowly, but they do grind. Hope your docs get it figured out soon.

[godgirl]

Hey, Debra.

I've had this happen on and off since all my other symptoms started. I also have no holes or perforations. It feels like my sinuses are cold and raw. And it can be painful! Sometimes I just don't want to breathe thru my nose.

Unfortunately, I've never been given any answers, either... Now I just kind of live with it. I got tired of it being discounted or not taken seriously.

Good luck and let me know if they find anything - I'd be interested to know.

Jen

[Jaha]

Deb,
Wishing you all the best in finding out what's up with your new symptoms. It is good that you sent it to your doc at CC. Take care and let us know what you find out.

[Alysia]

I think that it is wg activity if your have bloody "productions" from your nose.

[MikeG-2012]

I found out the hard way that nose and sinus issues can be a clue as to disease activity. My nasal/sinus activity was BAD from June through November of 2103. According to my ENT, the inside of my sinuses "looked like hamburger" and looked "angry". In November, a chest x-ray showed new lesions. Had I started treatment sooner, I might have avoided the lung damage. This is when we learned that I was a "Mychophenolate failure".

So don't let any doc tell you that there is noting wrong. It very well may be active Wegeners in the sinuses and nose. Mine certainly was.

[Debbie C]

This is when we learned that I was a "Mychophenolate failure".

What is that Mike ?

[MikeG-2012]

What is that Mike ?

Drug failed to work for me...

[Pete]

I believe mycophenolate is also known as cellcept.

[Debbie C]

I saw on the Drs. tv show yesterday that this girl had a rash that appeared all over her legs and they had a specialist look at it and it turned out it was an auto immune disease effecting the small blood vessels ( not wg ) I can't remember what she said it was but she said instead of giving her prednisone with all the nasty side effects she was prescribing her Mycophenolate
mosatilin ( I am not sure about the spelling on the second word ) I tried to googled it but couldn't find it but if you go to The Drs Tv show and look at yesterdays episode its on there. I was wondering if this could be used in place of preds ????
K...going to get my car washed and head to the gym...gotta keep up with Pete !!!