Positive diagnosis today

[annekat]

Funny about the dog poo. I think I'd actually be happy to smell that at this point. I'm not so sure about the hearing, since someone decided I needed hearing aids.... however, they don't know everything, do they?

[Mikek]

Hey Mikek, sorry to hear what you're going through. It's a crappy ride at first while you're figuring it out, but you will and you'll get on top of the situation that seems heavy and daunting right now.

Yes that's very common what she's experiencing right now. Here's a link to my blog (that I've been neglecting for a while) with other Weggie Stories: Weggies Unite: Other Weggie Stories - might give you a better handle on where you're at and what you can prepare for and how you become an expert patient in no time flat. I couldn't breathe through my nose for a while, but with getting the disease in more control my crusting, and stuffiness subsided and I got my sense of smell back.

The pred brings down the inflammation unlike anything else. Which is our main reason for discomfort and pain and disease damage. Inflammation is also the symptom that they use for diagnosis, so my question would be are they giving her just the pred because they suspect Wegener's and want to do more tests, or have they made a solid diagnosis, and if so why are they only treating the symptom and not using any chemo to suppress the disease process? If it's a solid diagnosis you need both chemo and steroids, at least that's my understanding based on the literature. Pred does have some immuno-suppressant qualities but not enough to stop disease progress.

Another thing that gets my skin to crawl is the drops in the ears for the infection.

It all started in my ears and after months I saw an ENT who told me it's an ear infection, and we put some tubes in to release the pressure and then it all went south pretty quick. I lost a ton of weight, had gone through a barrage of antibiotics for these 'infections' that weren't touched by them, but they kept trying all sorts of antibiotics when I went in for my final visit before ending in the hospital, my ENT told me that there's nothing wrong with me just a bad ear infection and to keep putting the drops in. "Yes, some ear infections really hurt" he said condescendingly to me, as I sat in front of him 25lbs lighter than our visit two weeks prior. It made me so mad and like I'm loosing my mind - I mean I'm pretty tough and how can a simple ear infection make me into such a puddle, I thought. Well next day, I was in the hospital getting told I have secondary lung cancer - whamoo. Well it turned out they were both wrong and I have Wegener's Granulomatosis, but it seems like a long ride to get a diagnosis, and then you end up educating the majority of the medical profession you run into.

So you have to find a doctor who you don't have to educate and instead he/she educates you.

Best of luck with you and Jenny and I hope that your ride is an easy one.

hi, yes it's a solid diagnosis and,like you, Jen has ear tubes and now, a grommet and she hates the ear drops - they hurt.

[Debbie C]

I remeber a while back ago ( about 5 yrs ) I went to my then pcp for an ear infection and was told I had a middle ear infection and was given antibiotics,they didn't work so I went back but had to see a dr. covering for him and he said I had a inner ear infection and gave me different antibiotics to take, when those were gone and still in pain and getting sick I went to a reg ent which tested my hearing and said I had an outer ear infection,then was given a different antibiotic. I went back to my original pcp ,very sick now ,he said I was fine and just had anxiety. I went home very sick with night sweats and chilling and I called him at night and he told me to go buy a therometer and not to bother him cuz I was fine. Well I ended up in the er with c-diff from to many antibiotics lost about 20lbs, I was down to 89 lbs and thought I was dying.To this day I will not take an antibiotic unless I REALLY need it. I found the ent I go to know, he said my ear drum just gets swollen and I didn't need any antibiotics at all. Moral to my story....do not take to many antibioatics.
Mikek, I'm glad to hear Jenny to starting to feel a little better.

[annekat]

Debra, I wonder if you could have already had Wegs, or the beginnings of it, with that ear infection. That is how mine started. It took 3 tries with different antibiotics to get rid of it and I was sick for weeks. But no one thought I might have Wegs until 2.5 years later, after numerous sinus infections and ear problems. My ENT later said I'd probably had Wegs all along.

[Mikek]

I remeber a while back ago ( about 5 yrs ) I went to my then pcp for an ear infection and was told I had a middle ear infection and was given antibiotics,they didn't work so I went back but had to see a dr. covering for him and he said I had a inner ear infection and gave me different antibiotics to take, when those were gone and still in pain and getting sick I went to a reg ent which tested my hearing and said I had an outer ear infection,then was given a different antibiotic. I went back to my original pcp ,very sick now ,he said I was fine and just had anxiety. I went home very sick with night sweats and chilling and I called him at night and he told me to go buy a therometer and not to bother him cuz I was fine. Well I ended up in the er with c-diff from to many antibiotics lost about 20lbs, I was down to 89 lbs and thought I was dying.To this day I will not take an antibiotic unless I REALLY need it. I found the ent I go to know, he said my ear drum just gets swollen and I didn't need any antibiotics at all. Moral to my story....do not take to many antibioatics.
Mikek, I'm glad to hear Jenny to starting to feel a little better.

thanks Debra,
Your story is all too familiar, maybe we need to educate the doctors.

[Debbie C]

Debra, I wonder if you could have already had Wegs, or the beginnings of it, with that ear infection. That is how mine started. It took 3 tries with different antibiotics to get rid of it and I was sick for weeks. But no one thought I might have Wegs until 2.5 years later, after numerous sinus infections and ear problems. My ENT later said I'd probably had Wegs all along.

Anne ,I wondered that also because it was about 3 yrs later when I got dxed and it was literally by accident. My boyfriend and I got rearended coming from a health food store.We went to the e.r to just get checked and they did a ct scan of my chest and found all these nodules in my lungs. They thought I had cancer at first. But I remember when I first moved back here from Fl. I had a hard time breathing and sinus headaches all the time.My dr. then put me on a neubulizer machine,by breathing got better and I stopped using it but I always blamed the move for my sinus problems because now I am surrounded by woods.So I may have had it a lot longer and noone ever knew. Who knows,I'm stuck with it now !!

[Mikek]

Jenny looks a bit improved to me and she's been cross with me today; that's got to be a good sign.

[Alysia]

speaking of ears problems, here is a little story:
my ears were in a terrible state, full of fluid (water?), which couldnt went out, the ear canal was swollen and I was some weeks on pred with no change. I couldnt hear well and I was desperate....
I was driving my car down a mountain, and then pufffff...
do you know the feeling in ears when you quickly change heights ?
sudennly I felt that the water in my ears "got down" or someting, no more fluid, I could hear again, I was so amazed and happy...
and then simultaneusly, the water in the radiator of my car "went down". I saw steam in front of me and for a second I became confused, what is going on here? then I stopped the car and realized the water "went down". fortunately my garage was close. never in my life I came so happy to the garage to fix my car, happy that there are no water, who care, in my car, but in my ears.
BTW lately I decided that since I cant "replace" my body, I will replace my very old car. I seperated from her (car is like a friend) with tears and bought new little car. this is the closer I can reach to "replacing body"....

[Mikek]

Jenny has had five weeks of Methotrexate/Pred reducing and I can see a positive improvement overall. Still bloody issues from throat and nostrils, huge appetite for food but generally much better. Her Methotrexate is to be by injection after this week. She had her bloods done last week and all acceptable levels. She has much trouble with insomnia.

[annekat]

Mike, the insomnia could be from the pred. It didn't affect me that way but does a fair number of people, I think. I'm assuming she takes it in the AM and not before bed. My doc says it takes about 4 hours for it to "kick in" after taking it, but in reality I think it is pretty much in her bloodstream all the time. Maybe when she gets down to lower doses she'll sleep better. Her huge appetite is very typical, of course. It sounds to me like she is doing very well! I'm happy that you are seeing a noticeable and positive improvement.