WG possible even if no Kidney Involvement??

[annekat]

Alysia and Anne (and anyone else who had vertigo early on): How long after you had the vertigo until you were then diagnosed with WG?
Thank you!

I had vertigo for the first time around 6 months after the big ear infection that I consider the start of Wegs. But this was about 2 years before my WG dx. Sorry, haven't started my vertigo thread yet, just needed to chill this evening. I'm talking about it on FB under Alysia's post.

[Alysia]

Alysia and Anne (and anyone else who had vertigo early on): How long after you had the vertigo until you were then diagnosed with WG?
Thank you!

Hi Deb. I was dx about 5.5 years ago. vertigo was couple of years b4.
BUT: in those years I think that wg was smoldering. as I wrote above.
PLUS: when I was 17yo I had inflamation in my joints with strange wounds on my skin. those wounds remain as few scars which disapeared after my first rtx this year !
I suspect it was already WG.
ALSO: when I was child, very small, I had lots of ears infections. so I think that I have wg for many years. many years in remission without treatment and some years smoldering, and then acute phase.
God knows....

[debhaz22]

Hi Michelle,
In between 32 and 44 can you tell me what your symptoms were?
Thx
Deb

[annekat]

I had some strange dizziness, fullness, and tinnitus in my ears about 10 yrs. before WG dx and 8 years before the first vertigo. This kind of thing usually seems to happen for me around the time of seasonal spring allergies, which is beginning now here. I think it could be both WG and allergy related.

[KimH]

Same for me. I had terrible sinus headaches but no infect. Tinnitus and mild hearing loss in the upper range. Also intermittent dizziness which felt like I was on a boat that was rocking . Sinus issues started in early 30's, tinnitus in mid forties also hearing loss. Diagnosed in dec 09 after fatigue and feeling awful that Aug. Coughing started late November. Cough not from lung issues; just sinus problems. Sphenoid sinus was full of stuff. Biopsy of sinus was neg in 09 but positive in Mar 2013. No kidney involvement.

[mishb]

Hi Michelle,
In between 32 and 44 can you tell me what your symptoms were?
Thx
Deb

Deb, It's hard to remember back that far these days

Tonsilitis has always been a big one for me, and ear infections.........all my life (from a very young age)
High blood pressure
Joint pains later diagnosed as Rheumatoid Arthritis.
Lots of colds that I couldn't shake as easily as everyone else - maybe 4 a year. As it stands, I have not had a cold since 2008 (touch wood) before WG diagnosis

[Lilly]

Im like you Nikki, When I was diagnosed, I had already been sick for a year with eyes, ears, nose infections, etc. And I got a kidney infection that put me in the hospital. But that was about 6 months before I ever got diagnosed with Wegeners. Then, they checked my kidneys, and found only some red blood cells when they took my urine. The red blood cells will settle in the bottom of my bladder, and about once every 2 years, they will loosen up and I will tinkle out blood and blood clots. The first time this happened, it looked like someone was murdered in my toilet!!!! (sorry to b so graphic), but it scared me to death! I thought, "this is it, the Wegeners is in my bladder and kidneys or either I have bladder cancer from the Cytoxan I took) But after a cystogram, my bladder looked good. I had tinkled out all the old blood cells, and I get a cysto every 2-3 years to check for cancer. But no kidney involvement at all. Well, the blood cells are a form of kidney involvement, but has never gone further than that in 23 years. As in your case Nikki, the doctors were apprehensive to diagnose me with wegeners, because my urine levels were perfect, but with everything else, it was obvious. I guess it proves its different in all of us, and the same in some of us.
BTW Nikki, has anyone heard from Deb and her trip from Johns Hopkins? I cant seem to find any answers on here, and Im afraid she got bad news :-(
Ill talk to you later sultry girl! :-)

[vdub]

When I was diagnosed, I had already been sick for a year with eyes, ears, nose infections, etc

I had read several years ago that the average time between symptoms and diagnosis was 24 months. I went searching for that quote and, like everything else, things have changed. I found the source below that says the average time now is 5 months. The url below looks like a real good synopsis of the current situation. And, it probably should be a good synopsis, since the site is hosted by none other than our very own Big Kahuna.
Vasculitis Patient Information - About Wegener's Granulomatosis