ENT symptoms

[Sladey]

Hi all,

Hope everyone is enjoying their Friday!

I just wanted to chime in and ask everybody what ENT symptoms they have experienced with Wegs? I've just had all my blood work done including ANCA and all has come back normal, but my strange ENT symptoms along with joint pains and peripheral neuropathy persist and I can't help but think it is Wegs despite the results. Unfortunately my doctor doesn't agree but he is unable to provide an answer to my symptoms.

I've got severe rhinitis on my left side, unilateral nasal blockage varying from 60% to 100% blockage at any one time that seems to switch sides, mild nasal crusting that my doc spotted, coughing up tar like mucus in the mornings, and rarely spitting blood that I can only assume is coming from my nasal region...usually fairly small amounts but on one occasion was about 1/3 a cup full. I also get a sore neck/throat on my left side intermittently that seems to appear and disappear extremely quickly.

So, what about you guys?!

Thanks for reading & I look forward to your replies!

Jake

[Birdie]

Unfortunately my doctor doesn't agree but he is unable to provide an answer to my symptoms.

Jake,

All that you describe could very well be Wegeners induced. The symptoms could also be unrelated to each other or could all be caused by a "something else". Jeeze I'm so helpful, eh? Sounds like you already knew that bit.

You are correct in suspecting Wegeners, the issues you describe are some of the classics yet they could easily have another cause. Wegeners is very hard to diagnose without c-ANCA and/or tissue biopsy (showing granuloma).

You need immediate testing to find out why you're having all these issues especially due to spitting up blood. While denying Wegs is your doctor suggesting something else or at least looking for another cause? Has he scheduled tests? Is anything being done or did you just get sent off to get better on your own? You wouldn't be the first... If he's got some sort of plan to quickly identify the cause then I'd give him the chance, very quickly. Otherwise I'd dump him so fast he'd only see a blurr of me leaving. Also, if I spit up blood I would go to the emergency room immediately. You'd be surprised how excited they get when you spit blood all over the floor in front of the admission desk.

Given the extend of upper respiratory issue I would want, as a starter, as much diagnostic testing as I could get on my entire respiratory system. Chest scans often show nodules in the lungs with Wegeners. Tissue biopsy of those nodules is often how patients are diagnosed. If you've got WG, since you're having severe upper respiratory issues, then you'd likely have lung involvement.

Gary

[txrepub4God]

My major issues in the nose department is constant rhinitis all year long, which leads to several sinus infections a year. I have also been diagnosed with something called "aspergillosis fungisitis" in the past, and when I get sinus infections, I have large, grey, rubbery "balls" that I blow out my nose called fungal balls. They are disgusting, block my breathing, and are terribly hard to blow out. I could say I've had "bad allergies" my whole life, but was finally diagnosed with Wegs this year after 2 years of symptoms/testing. I had times my ANCAs were negative, but my PR3s were always abnormally high. Do you know if your PR3 and/or MPO are abnormal? It sounds like you need a new physician and QUICK, if he's ignoring your symptoms & doing nothing to figure out what's wrong. NEXT! Only you care enough about you to find out what's wrong - I have no problem switching docs!

[me2]

Unfortunately, most of us go through several doctors before getting a diagnosis. I'm sure this is true for other conditions too- which you might have. As suggested already, getting another opinion from another doc would helpful. Its nothing personal. I have changed docs many times. Your current doc has had a chance to figure it out and failed.

In another thread you mentioned you live near Addenbrookes. Have you tried seeing someone there yet? It might be time. If you just rule out WG you have made progress and the docs there
have a great deal of experience with figuring out illnesses that SOUND like WG.

It is up to you at this point to insist on getting answers that satisfy you. Be persistent and get some peace of mind.

[drz]

Is your doctor giving you any treatment to help contain or reduce the symptoms? Even if they are uncertain about diagnosis they should be trying to give you some relief from the symptoms. They should also be aggressively trying to pin down a cause too in the mean time. Ask for a consult to some expert that might clarify your problem. If they hesitate to do so, go find one soon or ASAP on your own. I have found ER doctors often do well at setting you up with appropriate specialists to clarify your diagnosis and treatment needs.