Looking for advice from Canada

[jola57]

Hello Terri2 and welcome. your symptoms do sound like Wegs but unless a diagnosis is made from getting a biopsy and differentiating granulomas in the site, you may be fin for a long haul before geting diagnosed. I am seeing Dr. Luongo in Burnaby. Although he is not a Wegs specialist he is a Rheumatologist and is doing afine job. I do envy our south of the border friend's ability to see a true Weg's specialist.
It was a neurologist who first diagnosed vasculitis and asked for appropriate tests. Luong is the one whGood lucko insisted on biopsies. I would think that in your case a biopsy of lung and throat

[Terri2]

Hi Jolanta, thanks for the welcome.
Would a biopsy of lung and throat show anything if I am not currently having a problem with those areas if I had Wergener's?

[Jack]

It needs to be a biopsy from an area showing active symptoms and even then the result will not give a 100% diagnosis. This is only achieved by putting together the whole picture.

[Terri2]

Thanks Jack...
Would a biopsy of a sore on my leg show anything? I have a dermatologist appointment coming up just after Christmas....

[Jack]

Not sure on that one. I've had biopsies made of various skin problems that I have had, but they have been for research and I have not asked the results.

[elephant]

Terri, from what I have heard they usually do biopsy of Lung/kidney/sinus. I have seen ton's of dermatologist about skin lesions and rashes and they did not have a clue what they were. They usually have to get a good amount from the biopsy site.
The kidney failure is silent, so get that checked. With any autoimmune disease you are treated with immunosuppressant medicine. I may sound like a broken record, just be persistant, because sometimes you just want to believe you really don't have this disease or problem. Hope for the best for you.

[Doug]

...And remember: elephants have good memories! I concur with elephant's advice. Please just do it.

[Sangye]

Terri2,
Yes, a vasculitic skin lesion can be biopsied. When I was first admitted to the ICU with hemorrhaging lungs and a (+) ANCA, they wanted a biopsy to confirm Wegs. It was far too dangerous to do a bronchoscopy (for various reasons). I'd had daily red lesions on my legs that began when the Wegs symptoms began. They biopsied one. It came back "Leukocytoclastic granulomatous tissue" which is consistent with Wegs.

Even though I have chronic lung involvement, none of my docs (including Wegs specialiasts at JHU) have ever wanted more biopsies to demonstrate Wegs.

I've been told that some skin lesions might show a (-) biopsy. Therefore they should biopsy several lesions if possible.

Biopsying an area that is not involved will not show anything.

[jola57]

I had to have two biopsies. first one was done on my thigh muscle and only showed recent inflamation, then a biopsy on my sural nerve ( a foot nerve) was done and it showed granulomas leading the Weg's being diagnosed. I would caution anyone to get a nerve biopsy if another site can be used. That nerve will be dead and will not be regenerated.

[Terri2]

Yikes Jolanta and Sangye, that all sounds very scary.
Terri, I am on Thyroid medication, I don't have Graves though (for sure). Yes, I agree that many of the symptoms apply, but, given that I am on thyroid medication, I don't think my symptoms are from that. I am leaning towards the Wegener's given my symptoms of the past 2 or so years. So many strange things that I never thought were connected until I started reading the symptoms of Wegener's. I find it all very strange. I guess I'll take my list of the symptoms that I have experienced to this new doc on the 4th of Jan....Maybe he will order the ANCA test.
I can't imagine what it is that is on my leg...but it has been there for 15 months now. It's very annoying as it occasionally becomes incredibly itchy. I'm going to be very interested to see what the Dermatologist thinks it is. The Dermatologist I'm going to see diagnosed a friend of mines Stills disease based on a rash she had...hopefully he can figure out what is wrong with me. I suspect he is going to just give me some cream and send me away. I have shown the spot to 3 other doctors, and all of them just kind of go hmmmmmmmm...and say they are not sure what it is. (That doesn't help me much) It's really a shame that it has taken this long for me to finally get to see someone who might know what it is.
On a positive note, I’ve had a bit of a reprieve from the exertion headache as I am currently on holiday from my job...and am working hard at not doing anything that makes my head hurt, especially bending down.
Also, Is it possible that my GP has not heard of the ANCA test...or would he have then ordered that test if the ESR test had come back positive?
Thanks again for your responses!