Just keep breathing

[Woodsyartist]

Hi.
As of this time, I am undiagnosed, but think I may be "hanging out" for a while and trying to make sense of all the medical issues involved.

I am from the Northeast US and live in a more rural area.

Pretty much my symptoms include lung involvement, though I have had several years of sinus issues. Bloodwork includes an elevated ANCA
and autoimmune issues run in my family, so I know the diagnosis sometimes takes a while. i was just told that a sinus biopsy may not be my
best method due to the chance for a false negative.... so I am coming to terms with what is the best option.

More about me......"when I'm not feeling sick....." I like to spend time outdoors, and work on my old house as I am pretty handy.
My sister encouraged me to start taking Yoga not that long ago. She stated that "they may not find out what is wrong for a while, so
you better start learning to breathe." I find it has been helpful even if it just centers me a little.

I am glad to have a community that can help me sort through some of the expected and least expected issues.
Thanks.
-J

[Wegetarian]

Welcome! :)

I also enjoyed yoga a lot when I was doing it. I tried taking a class in a nearby gym, but it wasn't the relaxing kind of yoga I like but instead some sort of exercise which I didn't really get into.

[annekat]

Woodsyartist, your case sounds so much like mine, although I'd rather you don't have Wegs. But I had the continuous recurring sinus issues, plus a couple of ear infections and hearing loss. The lung stuff came along later and got bad enough to get me into the hospital overnight for tests, where the doc overseeing me suggested Wegs after seeing my CT scan. I did have a successful nasal biopsy which proved the dx; however I had just developed a saddle nose, which was pretty much a dead giveaway which left little doubt that the biopsy was appropriate. The ENT took scrapings from the hole in the bony part of my septum and the biopsy came back positive for granulomas and whatever else they look for. So, although the lung stuff was more serious at the time, I didn't need a lung biopsy, which is more invasive than the nasal one, and yes, has a better accuracy record. I may have already told you all this.... but I tell it a little differently each time!

BTW, my ANCA reading was very low, even though I had WG, so the fact that yours is elevated is of concern. I think your doctor should not be too dismissive and should keep checking you out regularly.

I think you are on the right track with the yoga and breathing, and also with hanging out with us until you find out what is going on!

[mishb]

Hanging out with us is good therapy - don't worry about yoga :flapper:
We can teach you to breathe :thumbsup:

I agree with Anne, in that I think you are about to be initiated into the wide wild world of weggies ........ but hopefully I am wrong.

Certainly, learn as much as you can and keep your doctors on to it.

[woz]

Hi Woodsyartist, I live in a rural area as well, I had a biopsy done in my nose and in my lungs, all were inconclusive, but my symptoms pointed in the direction of wegs, so they have treated me for this disease. I have been lucky to battle my way, to the stage where I am almost off most of the cocktail of drugs, that I have been taking. I have learned that the best way to deal with this speed bump in life, is to find out as much as I can about it ( read all the posts on this website), and ask questions, from the Doctors you see, and most importantly the wonderful people who frequent this website. It is important when you talk to your Doctors, to be on the same wavelength.
All the best, I hope your recovery is short and sweet.

Regards woz.....

[NikkiNicole]

Welcome to our unfortunate community! I say unfortunate because we all have this blasted disease but ... we are all a family and if anyone knows how to help us feel better, it's us!!! I love that I found this place and I am most positive it will be of a great comfort to you as well.
Your story sounds so similar to mine. I basically had the worst cold/sinus infection I ever had for a year. It wasn't til my doctor came back from maternity leave, saw all my past complaints, and saw that they had just "diagnosed" me with pneumonia in the ER that she ordered the ANCA test which came back high. The symptoms were all there so I started visiting a battery of specialists to see about biopsies.
During one of my biopsies, cancer was found and all the specialists then backed off the wegener's idea. I even had my "pneumonia" spots biopsied. However, radiation was done for the cancer. My cancer markers are fantastic and still ... I wasn't well and getting worse.
A change of rheumatologists occured and ... she did her homework, contacting all my specialists, the pathologist who handled my lung biopsy and others. She saw no other option. I had granulomas in my lung. The biopsy was not what she would have ordered for wegener's but it had the answer she was looking for.
I finally got my diagnosis almost a year and a half after coming down with the cold from hell.
I feel lucky to have caught it at a stage early enough to hopefully not cause any permanent damage and I hope to stay two steps ahead of it to keep that from happening.
Welcome to our world. We are glad to have you, but sorry that you have to be there!

[debhaz22]

Hi Anne,
When you say your ANCA was "very low", what number was it?
Thanks!

[annekat]

Hi Anne,
When you say your ANCA was "very low", what number was it?
Thanks! I wish I could answer that! At the time, my doc was doubting that I had Wegs even though all the signs pointed to it. He said that my ANCA reading was barely positive. I didn't have the presence of mind, or know enough, to ask him what it was, but I had read about it on here and knew that there could be low or negative readings in some people with Wegs, and I told him so. Then I showed him my saddle nose, which I'd just noticed within a week or so. He put in a call to my ENT who had just gotten the results of the nasal biopsy I had asked for, on my own, and the results were positive for Wegs. I don't think I've had my ANCA tested since. I figure, I have Wegs, deal with it, and other tests have shown how much I've improved since starting treatment.

[Woodsyartist]

This is a good question I also had about ANCA. I have an ANCA that was high, as the normal range I believe is up to 0.8. How high can it go?? Is there a high and then crazy high distinction?

[Debbie C]

My anca test were neg for a long time,actually I think it showed positive 1 time,but I don't remeber the number. My first reumy didn't believe I had wegs until my lung biopsy proved differently.
Woodsyartist,sorry I can't help you on how high crazy high is but I think if there was a real problem your dr. would have said or done something. I don't even get tested anymore for anca in my monthly bloodwork. Does anyone else have this test done monthly ???

[drz]

My anca test were neg for a long time,actually I think it showed positive 1 time,but I don't remeber the number. My first reumy didn't believe I had wegs until my lung biopsy proved differently.
Woodsyartist,sorry I can't help you on how high crazy high is but I think if there was a real problem your dr. would have said or done something. I don't even get tested anymore for anca in my monthly bloodwork. Does anyone else have this test done monthly ???

Mine are done three or four times a year and it is mainly for the long term follow research study on treating GPA. They would certainly do it more often if i had symptoms of a serious flare again but other wise once you are in remission once or twice a year might be sufficient according to most doctors treating Wegs.

[Alysia]

Hi Woodsyartist,
welcome to the forum :hug3:
I just wrote about c-anca in another thread.
my 2 nose biopsies came negative which was false negative and delayed my treatment untill things went worse... don't count on nose biopsy.
if you can, try to do a walk every day: it helps breathing - lungs and nose and it even helped me when my ears were full of fluids... it is also good for the joints... and for the mood.

[debhaz22]

Hi Alysia,
how did they finally positively diagnose you?
thanks

[Alysia]

Hi Alysia,
how did they finally positively diagnose you?
thanks

Hi Deb,
the diagnosis was an option from just after the beginning but was not closed because of the false negative biopsies. my wg-doc did "case conference" about me in the hospital with a lot of experts and they decided it is wg according to the clinical picture: c-anca, blood test, ct and x-ray of lungs, involovement of classic organs, etc.
still they called it "limited wg" and didnt give me any treatment but sulfa and pred from time to time. it was a mistake, because things only got worse and after 5 years I am still not in remision.

[annekat]

Hi Deb,
the diagnosis was an option from just after the beginning but was not closed because of the false negative biopsies. my wg-doc did "case conference" about me in the hospital with a lot of experts and they decided it is wg according to the clinical picture: c-anca, blood test, ct and x-ray of lungs, involovement of classic organs, etc.
still they called it "limited wg" and didnt give me any treatment but sulfa and pred from time to time. it was a mistake, because things only got worse and after 5 years I am still not in remision. I can't imagine them not giving you one of the typical immunosuppressants, like maybe at least MTX, once they decided you had "limited Wegs". On a more positive note, I was reading something somewhere about a major research center in Israel for autoimmune diseases. Wish I could remember where I saw that, but will try to share when I see it again.