What else can it be?

[makabe]

Unfortunately, I seem to be stuck in the diagnosis process. I know this is a hard disease to pin down and was wondering what else your physicians considered before deciding Wegener's was the culprit -- especially if you did not seem "obvious."

I have had a nearly daily fever for about 19 months. I have roving joint pain (hands and hips are the worst.) I have had almost nonstop SEVERE sinus problems that are almost impossible to treat with antibiotics (on Sunday, I finished six weeks of Bactrim and Levaquin that finally brought me relief, but I was symptomatic again by Monday afternoon and am now back on Levaquin.) My CT scans show 100% occlusion of my left side, which was clear when I had another sinus surgery just 10 months ago. I have really dry eyes and what has been called "recurrent corneal erosion."

I had a positive c-ANCA in September (but low titer.) My titer is now negative ( have been on pred but nothing else other than antibiotics) and I have NEVER had any other elevated inflammation markers.

I am scheduled for a sinus biopsy in three weeks.

So, if you made it this far... I'm trying to think of what else this could be if NOT Wegs. All docs so far think it is, but seem determined to find hard proof before treating. (I am trying to get into Hopkins. Also trying to see someone that has just moved to my area from the Boston Vasculitis Center.) What else was considered when you were diagnosed??

Thanks for reading!

[Chris G]

It sounds like wg to me. I can't think of anything else that explains your symptoms. If it walks like a duck and quacks like a duck.........

When I was diagnosed, relapysing polychondritis was considered. But you don't seem to have symptoms of that at all. I refused sinus biopsies because they are notoriously inconclusive. You can have negative biopsies, and still have wg. In the end, due to the overhwelming abundance of symptoms that pointed toward wg, that's the diagnosis I was given. And with all of the research I had done (like you have), I agreed completely.

[makabe]

Oh, my goodness, Chris, your first sentence is almost WORD FOR WORD what my main doctor has said. Everyone agrees is almost can't be anything else. But, because they don't see a lot of Wegs, they seem reluctant to pull the trigger on treatment. Meanwhile, I deal with all of the icky symptoms!

I feel better just hearing someone else that knows what I'm talking about say that. I'm sure you understand: I don't WANT Wegs, but I'm sooo tired of not having a clear course of action!

[Nancy-S]

I'm very interested in this thread. I walk and quack like a duck. But the specialist in Utah told me he doesn't see wegs and sent me home.

Since I've been home, I've had my first ever (in my life) sinus headache/infection. It was so intense I was up for 72hrs. The ear pain was excrutiatin. Finally I blew my nose, air literally squeeked out of my ears and I got relief. My hearing has significantly decreased since. Pressure still in my head and constant ringing in my ears. Now I have a flaming hot throat infection. Roaming leg pain, fatigue, and still traces of blood in my urine (last test was Nov).

I spoke with dr. Koenings resident dude yesterday. He changed his tune a little when I told him I'm very suspicious of the new sinus problems simply because I have no hx. I also reminded him the extent of his exam was to peek into my nose and ears and he looked at 6 week old labs.

I'm seeing an ENT this Friday. I think its wgs and I'm not giving up until I get on track to save my life. Sorry for so much detail but I want this story on here in case it helps someone in the future.

I've researched a ton, I've asked others to research (without emotional involvment) and came up with NOTHING. I did find a published paper from 1989 that studied a group of wgs patients with a medium age of 44. A good percentage didn't have kidney involvment and it delayed dx by 3.6 years. These patients typically had normal inflammatory markers. It was a good example that each patient is different and should be treated as such.

If you come up with other possibilities, I would appreciate the info.

[Chris G]

Karen - if you're not seeing a true wg specialist, you really must get one. Even if your doc decides to "pull the trigger" so to speak, he's probably not really qualified to treat wg, and will treat you "by the book", which is not the way to go - especially since you likely have "incomplete" or wg lite" like Sangye likes to call it. I have "limited" or "head and neck" wg (wg lite I guess), and it was not responsive to the initial treatments they started me on. You need someone who knows the disease, and can think outisde the box. Getting a diagnosis is very difficult, and I completely know your frustration and eagerness to simply find a diagnosis! For me, it was 4 years before I was diagnosed. Not until I saw truly qualified docs did I get the diagnosis.

Nancy - I too have always had normal or near normal inflammation markers. However, I've always had positive ANCA results while flaring. We are truly all different, and the lab results are not always a true indicator. But they are sometimes good for pointing docs in the right direction.

[Al]

You see, Nancy and Karen, in so many ways it doesn't matter what you call it; the fact is, when you hurt, you hurt. But a DX can indeed be useful, as the doctor usually won't start on a course of treatment without one.

Nancy, you are so right: "each patient is different and should be treated as such." And every disease is different. It is true that kidney involvement provides a greater sense of urgency (in my case, it was maybe three weeks between obvious kidney distress and the diagnosis). And it is also true that some signs are ambiguous, or some kinds of confirmation yo would like to see are non-existent. In your case, however, it is not clear that you do not have some kidney involvement, whatever they want to call your ailment. But I suspect that in many cases, the problem is as Karen notes: Doctors are reluctant to make the diagnosis, simply because they are not so familiar with WG. I know though sinus biopsies are not totally reliable, but often the pathologist is your best ally. (In my case, my nephro consulted with the pathologist before making the call.)

Al

[Nancy-S]

I am glad that we aren't diving into dx/treatment. But, wishing there was a way to intercept in such early stages. Surely remission would be better achieved. I suppose there's just not enough research. No $$, no time, no interest.

For that reason, I'm my best advocate. Ill keep a watchful eye, and count the beautiful days without harsh drugs. Your story (and so many others) about being 3 weeks from dialysis is the exact thing I'm trying to avoid. Currently my last labs were in November, much too long ago.

Karen, keep being assertive. It sounds to me like you're close! I hope its not what we think it is, and they can pinpoint something much easier to handle. It sounds like you're in good hands.

[makabe]

I was probably too hasty when I said "they don't see a lot of Wegs." I sought out doctors who do see Wegs patients regularly while I wait to hear about Hopkins taking my case. My doctor was supposed to call to follow up on that today. I just meant it's a rare doctor that has a Wegs-only specialty (or so it seems... I know a few exist.) While I wait, it turns out someone from the Boston Vasculitis Center has come to my area, so I'm also trying to get in to see him.

My husband made a good point tonight. He said there may be some element of them having to do certain tests before treatment, no matter sure they are, so they "cover themselves" if, heaven forbid, they gave you drugs like CTX or MTX when you didn't really have WG.

[Dryhill]

When I read stories like Karen's and Nancy's I realise how lucky I have been in being diagnosed so quickly. Ok so it took about two years for my GP to send me to hospital, the hospital did not like my SATs (78%) so decided to keep me in and start doing some tests, on the sixth day I first heard of this weird disease and treatment started.

Although my consultant is "only" a rheumatoligist he has fifteen of us with WG and patients with the other forms of Vasculitis. Whilst he is not a Vasculitis expert he does have a great interest in such diseases and attends relevent conferences and keeps abreast of the latest reports. Also Peter (PWC51) and I give him anything we have come across with a "Oh have you seen this?"

Karen all I can say is quack, quack and tell your doctor to pull his/her finger out. About a year ago, in this country (the UK), a 14 year old girl was diagnosed with WG. Two days later she was dead, purely because they had taken so long in working out what was wrong with her!

Jim

[makabe]

Every doctor alludes to the fact that they need to make a diagnosis because it's not safe to let Wegs go, but I appear "too healthy." The other perplexing thing is that I had a seemingly similar episode in 2007 that went away without treatment.