Not sure if I've got WG, but very concerned

[Al]

I remember my kidney biopsy was relatively painless and I slept through most of it. When I woke and I asked them how it was coming along they said it was done.

Good story. My whole deal is to get the medical people off script. I had the radiologist laughing so hard she nearly missed her mark. For me this was the simple part. Worse was being required to be tied to the bed for the next 15 hours or so. Along about half way through that purgatory, they gave me a roommate--"Poor Vern", who had had prostate surgery and had a mis-installed catheter. He was in serious pain, but it turns out the surgeon was playing tennis and couldn't be found. Then Poor Vern lost his call button. I called into the nurse's station on his behalf, announcing myself as his "cellmate". Poor Vern and I became good friends. Anyway, it was fantastic to be allowed to get up and walk around a bit about 2:00 in the morning....

Al

[maria garcia]

Vern my aughters Biopsy has taken two weeks and yet nothing Maybe her pathologist is also playing tennis. I have to laugh if not I will definetly CRY!

[heartspun]

Thank you all, for the replies and especially urging me to not let this go - it's so easy for me to convince myself that I am "not sick enough" even though I have no hearing in my left ear. It seems as if I won't get any serious medical attention unless I wind up in the hospital. I spend every day ridden with fear and anxiety about what horrible thing might happen to my body any minute now, or perhaps I will just be this way for the rest of my life. It's a bad place, not liking this at all.

[Chris G]

Heartspun - What kind of progress have you made toward seeing a rheumatologist who specializes in wg? I did the whole ENT/Opthalmologist/rheumatologist circuit too (many of us did). Until you find a rheumy who knows wg well, you're not likely to get a diagnosis. They don't know enough about it, and will tell you that your symptoms don't fit, even when you know damn well they do! By the time you find this forum, you know more about wg than most garden variety rheumies & ENTs! Yes, a complete list of your past and present symptoms is needed. When you find the right doc, it will give him/her the background necessary to diagnose you.

Negative ANCA doesn't necssarily mean anything either. When I'm flaring my ANCA happens to be positive, but my ESR and CRP are usually normal.

The ear infections you're suffering can be very painful - I know them well. I think they can also be very dangerous. By the time I was diagnosed, my eardrum had erupted, my mastoid bone was full of fluid as well. It took over 10 days for the fluid to drain, and I was in agony for at least 4 of those days..... even with 3 different pain pills. Your ear infections were not viral or bacterial because (if they're similar to mine) they are caused by the eustachian tube being closed for so long. This causes a vaccuum inside the middle ear, which pulls fluid from the surrounding tissues. That fluid sits in there, continues to fill (overflows to the mastoid), and gets infected -or not - but the resulting pain and pressure can be unbearable. I lost much of the hearing in my right ear last year as well, but it returned to normal after about 3 months of treatment with antibiotics, methotrexate and pred.

You asked about nasal/sinus and ear biopsies. To my knowledge, they don't do ear biopsies. As Sangye said, sinus biopsies are notoriously unreliable. When I first saw the ENT (wg specialist), the inside of my nose was a mess, and he said he could see the typical "cobblestone" appearance of wg inside my nose. At that time, he confirmed my rheumatologists wg diagnoses, via that observation. Later when the rheumies asked for a sinus biopsy for absolute confirmation, I had been on mtx and pred for a couple of months, and my symptoms were much less obvious. The ENT told me he'd basically be taking (large) random samples, hoping to find something. No thanks. I refused.

The moral of this very long story, is that you MUST find a doc who specializes in wg. Regular rheumies, and ENT's will not put the pieces together for you.

[heartspun]

My primary care doctor, bless her, has agreed to submit an urgent referral for me as soon as my new insurance takes over, next Monday. It may still take a number of weeks to get in to see a specialist. There are two; one at UCSF and one at Stanford. I have as many of my records together as possible, including a sort of "timeline" that I wrote up which summarizes everything.

Chris - the ear issues sound identical. The fluid has leaked out and crusted up the outer ear, although that seems to be dwindling. Did/do you have problems with both ears? I think the twinges are starting in my right ear as well, but so far it's still clear.

I am so glad I found this board.

[Sangye]

Wow, I am SO relieved to hear that you're going to get to a Wegs specialist. Whew.

[Chris G]

My primary care doctor, bless her, has agreed to submit an urgent referral for me as soon as my new insurance takes over, next Monday. It may still take a number of weeks to get in to see a specialist. There are two; one at UCSF and one at Stanford. I have as many of my records together as possible, including a sort of "timeline" that I wrote up which summarizes everything.

Chris - the ear issues sound identical. The fluid has leaked out and crusted up the outer ear, although that seems to be dwindling. Did/do you have problems with both ears? I think the twinges are starting in my right ear as well, but so far it's still clear.

I am so glad I found this board.

Yes, I have had trouble with both ears. With my first known flare, around 07/08, my LEFT ear was affected, both eyes, sinuses, throat. And like you, the plugged ear has been one of my first and most reliable symptoms. In 08, the wg went to sleep on its own before I could find a proper doc, and get a diagnosis.

When I flared again in the spring of 2010, it was my RIGHT ear that was affected, along with throat, sinuses, and nose (no eyes this time) - oh and also pain on my sternum (I think it's my body's version of joint pain). So each time, it has been a little different - sounds like it has been for you too. Anyhow, last year's flare was the whopper that was needed in order for someone to realize that I do have wg, because the right side of my head damn near exploded, and my nose was a bloody mess (literally and figuratively!).

Were you ever on prednisone for any length of time? I think I read that you had tried a medrol dose pack. If you felt any improvement in your symptoms while taking pred or the medrol pack, it's important to include that in the information on your time line. I was given 2 medrol packs by my PCP last summer, and each time, my ear miraculously popped open within 2 days, and the second I finished the pack, the ear closed right back down again. It was a big clue pointing us in the right direction.

Oh, regarding that crusting in your outer ear......try to clean that out if you can - warm water and some q-tips (carefully!). For me it caused a lot of irritation, and eventually created an infection in the outer canal (sort of like swimmer's ear I think). Then I had to use the drops again to clear that up.