Input needed

[LilyPony]

Hello all... Been quite a while since I've been on here because what I thought may have been progression of my limited wegs was attributed to severe acid reflex getting in my windpipe and causing severe cough-variant asthma. This diagnosis was well supported by acid monitoring and near immediate cessation of symptoms with Advair and a strong reflux med.

I got myself established with rheum who felt there was nothing to suggest anything other than the acid reflux. My limited wegs seemed well under control and didn't seem to be anywhere other than the area behind one of my eyes and tear gland.

Fast forward to early Dec. I've been having sinus pain above that eye and nosebleeds on that side. I went to the rheum and had bloodwork done and was given antibiotics in case it was just a stubborn sinus infection. I got a call a few days later that my weg's "test" (ANCA I assume) was "essentially" negative, so it was unlikely that I had wegs at all.

This got me very upset because it was diagnosed from biopsies and we all know that there is no blood test that can prove or disprove with complete certainty. I don't know if the nurse thought I was stupid and tried to simplify the message, or if this is what the doctor truly wanted to relay to me.

Currently, I am having the sinus pain which has spread to my nose, on/off ear pain, and minor nosebleeds a few times a day... all on the weg's eye side. I've had what I assume is the nasal crusting on the bad side for a few weeks and the good side for the last few days.

I have an appointment with another rheum tomorrow, still associated with Duke, as my last resort before leaving the state to see an expert. The vasculitis foundation recommended someone (Dr Allen) from Duke rheum who doesn't accept new patients unless there is a very extenuating circumstance. The first doctor as well as tomorrow's doctor work in the same department so I assume they discuss and communicate with her.

Any advice, suggestions, things to ask or say, or what I should be expecting at this point would be greatly appreciated.

[drz]

We all know lab results are helpful in assessing our condition but not definitive. Our symptoms are considered the most valid indicators. Ask your rheumatologist if they agree with this statement. What are your other lab results like CRP or ESR? The CRP is generally accepted as more valid for current condition but it also reflects increases from infections. Also discuss and clarify what nurse told you? Does the doctor know of any other health problem that would explain your symptoms besides Wegener's? Good luck. Educating your treating physicians is often the biggest hurdle in getting care. That is why experts are so greatly appreciated because it is easy to educate them about how the Wegener's disease affects you personally.

[stikker]

I agree. I wouldn't get upset until you speak to the Dr. The nurse probably doesn't know what she's talking about.

[elephant]

Personally I think WG is stomping on your door step and you need to see a WG specialist soon. Do you have a doctor that is a little pushy aggressive that would help you get a referal asap?

[gurinbasra]

Hi,

You know I have active WG specifically around the nerve that goes just under my left eye - we know this from a recent sinus biopsy. Has your ENT specialist seen you because the Rheumy's are good for WG, but the ENT dr. will tell you by looking at both sides if they suspect it's an infection or a WG flare up (you know with that wonderful scope they stick up your nose!) My right side is always looking so normal and the left is a mess! Because mine was only on one side my ENT dr. had an MRI done and wrote to my Rheumy that he suspected the WG was still hanging around in there and the Rheumy took over from there.

I know from experience with WG in the sinus and ears that having the best ENT dr. is just as important as having the best WG specialist and mine both work very closely together. Personally, I think you're having a WG flare up and by the way, just because it's specific to one area you won't necessarily have a positive ANCA.

Good luck on seeing the new guy.

[Sangye]

Nice to see you again, LilyPony. Like the others have said you need to get proper care immediately. Has anyone done a recent MRI or CT to check on the post-orbital involvement? That should be done on a regular basis.

The ANCA has been shown to be unreliable other than for initial diagnosis. Any doctor worth his/her salt would know this after doing 10 minutes of research.

[LilyPony]

Thanks all. Sangye, that was why I was so put off by the test result pretty much ruling out wegs when it had already been confirmed on biopsy. And I don't know if it was the dr with the message, or the nurse with the message...frankly dont' care because that's not the level of expertise I want involved with my care. I will be sure to ask for a scan to see what is going on in there. I'm hoping today's new rheum can come up with something. Otherwise I'm off to the next closest recommended "expert" up in Virginia.

It's just so frustrating because there is no apparent systemic involvement (yet) so hard to be taken seriously. I've got a binder full of lab results, path reports, and clinical notes from my long since retired original rheum and every dr I see seems determined to undiagnose me. Which is fine, but the undiagnosis better come with a concrete answer and treatment instead of the "probably" and "might be" that I have been up against. To me it seems like it should be much easier to treat a localized issue now instead of waiting until it is systemic.

Well, I"m off to see the wizard...

[Sangye]

LilyPony, your thinking is right on with regards to diagnosis and treatment. However, I think if you're going to go to Virginia you should just come to Maryland to JHU and get the best advice possible. You can trust what they tell you at JHU and believe me they will take you seriously. It's a whole different world to be treated at a vasculitis center.

[elephant]

Lilypony, your WG might be systemic but you don't know it. WG is very silent, your blood vessels could be affected. When I was diagnosis with WG 2008, the Rhuemy said it was local in my sinus area, but it was not! A year after that my left leg would swell up when I sat down for 30 minutes. Now my left calf is so much better. Also my left arm did the same thing. Blood clot was ruled out.