WG possible even if no Kidney Involvement??

[debhaz22]

I was told by my Rheumatologist that it is VERY unlikely to have WG if kidney tests/function is good. Any thoughts??
Thank you,
CONFUSED. AGAIN. :confused1:

[NikkiNicole]

I have Wegener's ... my kidneys are perfectly healthy. My creatinine tests and urine levels are always pristine. This is the same thing my old rheumatologist said. He said I couldn't possibly have it because I wasn't that sick. Well ... I don't want to find myself that sick! I ended up with a better rheumatologist who talked with my pathologists, looked at my symptoms and gave me my official 100% diagnosis.

[Debbie C]

Yea Deb ,you can still have wg and not have any kidney envolvement. Thank God it hasn't gone to my kidneys and there are alot of other here where it just hits there sinuses or lungs. You never know where or when it may hit. You got another bad rhuemy ! Can't wait to here what they tell you at JH.

[annekat]

I can't believe a rheumy would say that with such authority. We on here know that it is just plain wrong! There are plenty of us on here with just sinus and upper respiratory involvement, and/or with lung involvement, and maybe some ear problems and joint pain, but no kidney issues as of yet. That doctor needs to be straightened out before he does someone harm.

[debhaz22]

Thank you. I appreciate the insight. Didn't sound right to me but this guy is supposed to be "one of the best" here in SC. Yeah, Deb C. I sure know how to pick 'em! I can't wait to get to JH and see what they have to say.

[annekat]

Thank you. I appreciate the insight. Didn't sound right to me but this guy is supposed to be "one of the best" here in SC. Yeah, Deb C. I sure know how to pick 'em! I can't wait to get to JH and see what they have to say. Actually, I hated to have to say something bad about your doctor. So I'm sort of hoping you misunderstood him! But it doesn't sound like he's the first rheumy to say something like that to someone on here. I'm glad you are going to JH and you should probably tell your doc there that you were told this, and who told you, if it doesn't seem too awkward. I know these things are easier said than done.

[debhaz22]

Hi Anne,
I appreciate your comments, REALLY! I feel bad for the people that go to these Dr's and just trust them blindly. So glad to have friends like you all to lead me in the right direction (to JH!)
:)

[drz]

I was told by my Rheumatologist that it is VERY unlikely to have WG if kidney tests/function is good. Any thoughts??
Thank you,
CONFUSED. AGAIN. :confused1:

Get a new one right away. Any one that ignorant is not to be trusted with your care. He sounds as bad as the idiot doctor that told me I didn't have diabetes even when my blood glucose levels were too high because I was too skinny to have it or even get it.

Any chance he meant you didn't have the type of Wegs with lung and kidney involvement which some doctors used to call Wegs limited. Maybe he meant your Wegs was not in kidneys or likely to show up in a biopsy there if your lab work was still OK which is lucky for you but it can still be in other parts of your body and cause serious harm.

[annekat]

The doctors who say these wrong things are often so arrogant, too, as if just because they are doctors, they are automatically right. Ihave run into this with my doc. He dismisses what I say even though I know some of these things from reading the forum, and he is by no means a Wegs specialist. I need a new doc, too, as has been discussed on here before.

[pberggren1]

I never put up with docs like that. I find another one very fast.

[MikeG-2012]

Tell that rheumy that you have a forum full of friends that have perfectly healthy kidneys!!!! Better yet, how about sending us his name and we can contact him directly? (I'd never think of doing that, but it felt good to type it anyway) <sigh> I am always amazed at the arrogance of some doctors. Hasn't this person ever read ANYTHING on the Internet about this disease? Every, and I do mean every, site that has anything about this disease states lung and/or kidney involvement. I haven't seen a single reference, even in the scholarly articles, that says that there's always kidney involvement.

Time to find a new rheumatologist Deb!

[annekat]

I think that all doctors who treat Wegs should have to read this forum! Unless maybe they are top specialists in the disease, in which case they should still look in on it from time to time. Here, they can learn about real people who have Wegs and what we go through and how much we really know, and maybe they'll see themselves on here once in awhile.

[pberggren1]

I am so blessed to have my doc. We laugh and hug and cry together at each appointment. I really do love her. And we have so much fun, especially with the residents she is teaching. The last visit I made the resident stumble a few times. I know he will make a good doc. I had a private chat with him afterwards and took him out for lunch and told him where he needs to improve on his communication skills and that I can help him with that. I love to help new docs. We have communicated by e-mail and skype and phone a few times now as well. He will be a nephrologist as well.

[annekat]

You have been blessed with some excellent docs, Phil. I wish we could all say the same.

[pberggren1]

Yes, for sure. I am truly blessed with good docs. And of course also blessed with this awesome forum and awesome people on here. I do wish I still had my doc in town here. Sucks to travel 3 hours one way to see my doc a few times a year. But at least I have a good doc to go to.

[annekat]

I feel the same way about the forum and the people on it.

[pberggren1]

You are certainly such a kind soul Anne and such a great addition to this Forum......:love:

[annekat]

Thanks, Phil.... it doesn't seem that long ago I was new on here, but it's been almost 3 years.

[pberggren1]

Time flies by so fast when you are having fun......:hug2:

[mishb]

I was told by my Rheumatologist that it is VERY unlikely to have WG if kidney tests/function is good. Any thoughts??
Thank you,
CONFUSED. AGAIN. :confused1:


Seriously!!!!! What a crock :predrage:

I'm sorry that you have to put up with these sort of comments Deb :thumbdn:

Therefore, if this is the case, how many people have been told this type of information and walked away thinking, thank goodness I don't have Wegeners. :crying:

Without reading this forum or groups similar, how would others even know that the information, they were given, was not true :unsure::sad:

I'm glad you are here Deb :hug1:

[vdub]

I won't say ditto, but will add that my wegs was proven by two biopsies on the granulomas extracted from my brain. My kidneys are fine except for the lack of the hormone (vasopressin) that controls kidney function, but that's a pituitary issue.

I'm guessing your doc misunderstood the question. This disease is so ill- defined that there are very few "givens" for it. Even my biopsies aren't proof beyond all reasonable doubt, but they're pretty strong physical evidence.

[Alysia]

especially with the residents she is teaching. The last visit I made the resident stumble a few times. I know he will make a good doc. I had a private chat with him afterwards and took him out for lunch and told him where he needs to improve on his communication skills and that I can help him with that. I love to help new docs.

you should come to Israel to give "education series" to our docs :)
not only the new docs but also the old ones, who know almost nothing about wg :(

[annekat]

I was in the ER with a sudden case of severe vertigo about a week ago (which I'll discuss on another thread)..... anyway, the doc there had to "look up" WG, which didn't surprise me a whole lot. I think he sort of knew what vasculitis is.

[debhaz22]

ANNE: Vertigo goes along with WG???????????

[pberggren1]

Ya it can Deb if your ears are plugged or something like that. Wegs can also affect the crystals in the ear too.

[Alysia]

Hi Deb.
vertigo can be the result of problems in the central nervous system (brain), and in that case it is not wg-related. it can also be the result of problems in the inner ear and in that case it might be the result of wg. I had it. prob because of wg, although it was before I was dx.
why are you asking ? are you suffering from vertigo ?

[debhaz22]

NEVER heard this, thanks Phil! This whole "thing" started almost 2 years ago with vertigo! I went to 3 Dr's and they had NO idea. OMG!!

[Alysia]

vertigo was one of my first signs as well :sad:

[debhaz22]

Alysia,
YES!! It started almost 2 years ago with severe vertigo and no one knew why. Just wondering if it was the start of something.

[Alysia]

I guess it was. it is exactly what I had. long before my acute onset (which was more then 5 years ago, so the vertigo was even before). there were couple of years of "signs" like fatigue, coughing, ears problems, joints aching and also vertigo :sad:

[debhaz22]

Alysia,
I cannot believe how similar our symptoms are/were! Thanks for sharing with me!

[Alysia]

btw, I also dont have kidney involvement.

[debhaz22]

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!

[pberggren1]

I had vertigo early on but it was mixed with other symptoms and a very fast and severe onset.

[Rose]

HI

Many here do not have kidney involvement but to those that dont, there is always the potential of WG attacking your kidneys so you must be vigilant and have your kidney function checked periodically. They probably wont do it that often if there is no kidney involvement and if that is the case I would suggest the urine strips to monitor yourself more frequently. I dont know what the statistics are of an initial diagnosis of so called "Limited" Wegeners attacking the kidneys at a later stage but it can happen.

I suffered from sudden severe vertigo I think about 3 years ago. I was under medication for WG at the time and bloods taken to check for a flare were all normal. The Rheumatologist was sort of saying it was not WG related and was doing nothing. I eventually took myself off to an ENT who did hearing test and an MRI scan of the brain. I was also having some increase in sinus and hearing problems. Turns out it was mastoiditis caused by WG and I was treated with a increase in Pred and nasal cortisone irrigations along with antibiotics. All symptoms disappeared within a week or so and that was that. Has never returned. There is a thread which I started headed VERTIGO should anyone be interested.

Rose

[NikkiNicole]

I had bad vertigo a lot in the years leading up to this, always dismissed by the doctor as being ear related. My dad always had chronic inner ear infections so ... I never questioned it.

I have my creatinine checked every two months. I do a urine test every two months. Thankfully, the team I have on my side right now is AWESOME!

[annekat]

Deb, I'll start a thread soon on my recent vertigo experience. From talking to people, I find that quite a few have had vertigo even though they don't have WG. It comes and goes mysteriously, and a web search told me that 4% of ER visits are due to vertigo. In most cases it is probably related to a temporary disturbance in the inner ear. So yes, it can be related to WG since many of us have disturbances in our ears that are WG related. My ears had recently gotten plugged up, especially one of them, whether due to allergies or WG activity or both. I have lost most of the hearing in one ear during the last week and it just has a rushing sound. It doesn't surprise me that you had vertigo at the onset of WG. I had a severe ear infection at onset, which is not uncommon, and vertigo on a couple of later occasions. A lot of people seem to have ear issues at onset. I expect things will get back to "normal".... time will tell

[Alysia]

Hi Anne. I am worried about you. when are you going to your ENT ? you need to see what to do about your hearing. maybe you need to take antibiotics. please take care. waiting for you update. :hug1:

[annekat]

Hi Anne. I am worried about you. when are you going to your ENT ? you need to see what to do about your hearing. maybe you need to take antibiotics. please take care. waiting for you update. :hug1: I don't think I have an ear infection. I think my ear is temporarily plugged. Will update on FB so as not to hijack the thread.

[mishb]

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 was diagnosed with Meniere's when I was 32 - diagnosed with WG at 44

[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 :wink1:

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 (http://wegenersgranulomatosis.net/15_about_wegeners.php)