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

[heartspun]

Hello, my name is Linnea and I am 35 years old, married with two kids, living in the SF Bay Area (California). I have been having a series of mysterious and seemingly unconnected medical issues for several years now, and I have begun to suspect that I may have Wegener's. I would love dearly to be incorrect - and my rheumy (whom I see for inflammatory arthritis, and whom I do not care for a great deal) says she "highly doubts" that I could have WG. All the same, she ordered the ANCA test for me and we should get the results of that early next week.

Here's a basic run-down of my issues that cause me to suspect WG:

2002 - Kidney attack. Possibly passed a stone; blood visible in urine.
2004 - 1st child born
2005 - joint pain flare-up, bladder infection
2006 - 2nd child born
2009 - severe joint pain flare; persistent cough (over 3 months); kidney colic; blood in urine; sinus congestion w/ clear runny nose.
2010 - kidney colic, blood visible in urine; terrible sinus infection, fever; kidney colic, blood in urine AGAIN; x-ray with "tiny pleural effusions".
2011 - "ear infection" - did not resolve with antibiotics - persisted 1 month; sinus infection with bloody nose; joint pain flare; second ear infection

Currently I am still experiencing the "ear infection" - have been on amoxicillin and ear drops for a week and have had absolutely no improvement in condition. There is little pain, but profound hearing loss, tinnitus, feeling of fullness on entire left side of head, some tingling and numbness in sinus area on left side. This is identical to the earlier "ear infection" except for the numbness and tingling on my face - this is new.

Since approx. 2007, whenever I get a seasonal respiratory infection, I *always* lose my voice, and experience a persistent deep cough that lasts weeks if not months. In addition, since that time, every urinalysis tests positive for blood (but never protein). I underwent a cystoscopy to look for causes, and the urologist found nothing, stating "some people just always have blood in their urine". Repeated episodes of kidney colic have never produced a stone.

I'm currently waiting on the ANCA results and a referral to an ENT specialist.

Any thoughts or advice?

[Psyborg]

I don't think they should rule out wg, but even an Anca test is not 100% guaranteed to come back positive. I would suggest attempting to see a specialist with Vasculitis who will likely be more knowledgable than your rheumy. Especially given you don't sound likebyou see eye to eye.

[Sangye]

I agree with Bob that a visit to a major center would be a good idea. I'm wondering why they haven't done a kidney biopsy yet. Surely there is sufficient reason.

[heartspun]

I will be requesting a referral to the UCSF Vasculitis Clinic after the ANCA test results come in... I guess until then, there's nothing to do but fret!

I never got a kidney biopsy because I had to change health insurance providers - and my new health care team is more concerned about the arthritis and less about the kidney/blood in urine problems I had been having previously. I gave them a copy of all my records, but I swear they didn't even read through them... I think I need to write up a "medical resume" to help them see the overall picture.

Just got my ENT appointment for Tuesday. Fingers crossed that I don't get brushed off.

[Sangye]

It will help you to write up a brief summary of your medical history just as you did above. Bring that to each doctor appointment. Ask them to look at it from a wider view instead of focusing on this symptom or that. Doctors should do that, but often don't. An ENT is likely only to focus on your ENT symptoms, but even there you can emphasize the larger picture.

[Psyborg]

I would suggest going to UCSF regardless of the results of Anca. Your symptoms certainly sound suspicious.

[norcalian]

Hey Heartspun...where are you seeing your rheumy? Dr. Chen at UCSF is the one that is suggested by the Vasculitis Foundation. There is also a guy from Stanford on the list...I don't remember his name. I was recently diagnosed with WG...so I have been meaning to get in to see Dr. Chen...but I have Kaiser and they will not pay for the consultation. So I'm not sure when/if I will get in to see her. Although it sounds like I have a bit more faith in my rheumy than you do...so I'm not in a huge hurry (especially since my treatments are coming along pretty well). I hope you get this figured out soon...and as you will hear on this forum, the sooner the better. WG can get really nasty really fast.

[drz]

All your symptoms listed are consistent with having Wegs (now GPA) but it would help to have biopsy that could confirm it but biopsies are not !00% either unless the organ biopsied is infected. Unfortunately neither are ANCA tests !00% in yielding a diagnosis. Best case is a good review of everything by a Weg specialist who knows what to look for and how the symptoms are relate.

Good luck in sorting it out. Was reading Cindy's book today and she said her symptoms were present for over a decade before she got correctly diagnosed. Many of us went several years and can share your frustration and uncertainty. At least you now have Wegs on the radar which should help get it confirmed if present. Most of us never heard of it before our diagnosis.

[elephant]

Your symptoms sound like Wegeners, but you really need like what everyone said a Wegeners specialist soon, before you lose your hearing or other damage to your organs. Wegs can go in any organ and cause trouble, rare but it can. You are very proactive right now, just don't let your rheumatologist think there is nothing wrong. Push back and ask questions...or ask her to call one of the top wegeners specialist in the US. Good luck and keep us posted.

[vdub]

Most of us never heard of it before our diagnosis.

I'm kind of amazed that you have done enough research to come up with our obscure little disease. As everyone else has said "sounds suspicious, see a specialist".