NEVER stop what you do!!

[BookNut]

I just need to post kudos to all the folks who participate on this forum. I don't know if you are aware of how big a service you provide. I happened upon this forum about a year ago when I was mis-diagnosed with Wegeners. I have stayed with the forum for many reasons. I still have similar symptoms, so the posts are helpful. But mostly because I am so impressed with this community of brave and generous people.

Ultimately I have a severe case of chronic non-allergic rhino sinusitis. Say that three times fast. It seems a minor thing, but it brings on debilitating asthma/shortness of breath and has severely disrupted my life. I found the forum while researching my symptoms, and was immediately embraced by a warm and very helpful family.

I want all of you to think about how important you are. This forum is a lifeline for many people. I know you think about the folks that are members - but it goes way beyond that. I am sure there are countless lurkers out there who do not join - but find the resources here invaluable. There are also the one-time hits, who might just be lucky enough to find that ONE suggestion that proves to be THE answer for them. And I will be willing to bet that there are countless un-diagnosed Weggies out there, who eventually were diagnosed because they read this forum and realized that this could finally be the elusive diagnosis.

Right now I am enjoying a reprieve from my illness because of a suggestion made by one of you. I have spent almost three years researching and have NEVER come across the suggestion of mixing budesponide inhalation suspension with my every day nasal rinse. So far, it is like a miracle to me. I would most likely never have tried it had I not been part of this group. I have been to 1 PCP, 3 pulminologists, 2 ENTs, 1 immunologist, and 1 allergist. But you guys are the ones who had the answer. Until now I NEVER had even a single day in almost three years without a wheeze. I will be forever grateful.

NEVER forget the good you do everyday by posting to this forum. You are all amazing!!

[vdub]

Thank you! That's very nice of you to say and you are certainly welcome to hang around and discuss life with us....

[Debbie C]

It's nice to have you here too and even better that you don't have wg to deal with.You can always share some good recipes with us !!! (Gluten-free )

[ingemlb]

Fully agree with Jacquie about the Forum. Interesting to hear of a Wegener's "mis-diagnosis". Jacquie what made them decide a) you and it and b) you didn't?

[BookNut]

My allergist decided my asthma was not responding to the most commonly used meds, so she referred me to an immunologist. I had a mildly elevated lab reading. I can't remember at the moment what the indicator was. The immunologist decided that, given this one marker, along with my respiratory and sinus symptoms and lack of improvement with any other meds, that i had what she called a "mild" case of wegeners. She prescribed imuran...but that made me nervous. i went back to my allergist and asked for a referral to a pulmonologist. He was very sceptical of the diagnosis and did a bronchoscopy which ruled out wegeners. All in all,I guess it is better than having WG go undiagnosed. But it definitely makes you realize that one should always get more than one opinion!! My particular form of sinusitis has one thing that everyone agrees on. It is poorly understood, and does not respond well to treatment. The good news is it is not life threatening per se. But alas...it really aggravates my asthma. And my asthma is very atypical....responding hardly at all to nebulized meds. Nothing makes the wheezing go away and only prednisone takes care of the shortness of breath. But now it looks as if ...knock wood...i have found something that actually works!!

[ingemlb]

I was interested because my symptoms were very confusing. Some pointed definitely to Wegener's but then others didn't. My Rheumatologist called in another Rheumatologist who was also an immunologist and had more experience with Wegener's and he only took 5 minutes to diagnose Wegener's. You mentioned bronchoscopy which in my case also returned nothing Wegener's specific only "unspecific inflammation". The stomach biopsy (ulcers) also returned "unspecific inflammation" the sinus biopsy also return "unspecific inflammation". So it's a bit of a mystery. However I had very specific Vasculitis and it responded very well to the Prednisolone once it was increased to 40 mg. Anka tests also were conclusive apparently and other blood markers. So ... it's still a bit of a puzzle :(

[mishb]

Jacquie - whether you have WG or not, you are definitely one of us :thumbsup:

It is not only the good people on here helping you, but you also put in your fair share of advice to help others :hug1:

So - Thank You

[Alysia]

thank you so much, Jacquie, for your kind and warm-hearting words :thumbup:
I totally agree that the friends here are life saving, true experts and just amazing :wub:
I think that you are the only one, we can tell : "I am glad you are here", without the need to also say: "sorry that you had to".
I like your posts. come to visit more often :hug1:

[woz]

Hi Jacquie, The amount of help, and information I have received here, has been fantastic. When I visit some of my doctors, I know as much as them, and sometimes more. If I had not found this site, my stress levels would have been a lot higher, and my road to remission, a lot bumpier.

Regards warren

We''ll be friends, till we are old and grey.......
Then we''ll be new friends!!!!!!!!

[annekat]

Jacquie, you have been a great addition to this forum even without having WG. What you do have sounds equally troubling in many ways. I'm so glad you were able to use a suggestion on the forum and have it work so well. Maybe more of us need to get access to that drug so we can try it, too. I'm guessing it is part of what goes into a nebulizer, and I don't use one, so don't have it. But I'm not having much in the way of nasal or sinus problems right now, though I may be feeling some pressure and fullness from seasonal allergies.

And you are so right about the quality of this forum and the people on it. If I suddenly didn't have WG (yeah, right...) then I would have a hard time staying away, and wouldn't feel the need to, since I've been so welcomed and made so many friends over the last 3 years or so.

[Wegetarian]

Well I'm happy that you aren't one of us in the diagnosis kind of way, but rather in spirit :D

[BookNut]

Well I'm happy that you aren't one of us in the diagnosis kind of way, but rather in spirit :D
Thanks so much for brightening my day. I plan to always stay part of this group, and hopefully i can be useful now and again!!

[gilders]

I'm not one of the more active members, but hope I've managed to give some occasional good advice and support. So, yes, I will continue the "good work" and you're most welcome.