still undiagnosed and annoyed

[NicoleB]

you might rememebr a post i made months ago. i had a years worth of wegeners-like symptoms, and i've seen countless ENTs and Rheumatologists. my symptoms were always mild, so while the docs were concerned, they still didnt consider it enough evidence. afterall, all the my blood tests were normal. they tried to say "oh maybe its an allergy". i know what an allergy feels like. its itchy, watery, etc. not to mention, typically responds to allergy meds. well, mine is more like an inflamed feeling in my nose, sinues, pinkeye (which the eye part DOES seem allergic because kicking my cat out of the room has nearly stopped my eye issues), shortness of breath, roaming muscle pains....
the scariest thing was the nasal bloody mess i had going on. but it suddenly stopped after 3 months. most of my symptoms have pretty much stopped after months of being active. thats great and all, but its still affecting my poor ears. they ache, feel full, and ring. my last ENT ran me thru tests and said my ears look totally healthy. i still think i have a very mild flaring form of the disease. Docs are not convinced. they think i would be much sicker if i had wegs.
its going to be even harder to get relief bcause the visible symptoms like pink eyes and nose ulcers vanished. and you cant "see" my ear discomfort or the occasional fleeting nose and sinus pain.
they think i'm a hypochondriac at this point. i dont know where to go from here. i feel like i'm letting something fester and may cause damage over time. i also cant keep spending money and missing work to see doctors who blow me off. what would be your advice? right now i'm just taking lots of antiinflammatory herbs and maybe thats why my symptoms improved, i dont know.

[freakyschizogirl]

Docs are not convinced. they think i would be much sicker if i had wegs.

Hey NicoleB. This quote sounds much like me. They were playing with the thought of Wegs with me. After They told me i googled Wegs and thought myself that if i had it i would be very sick. I didnt know you could have a limited form of the disease.

Good luck and keep pressing for answers.

[drz]

you might rememebr a post i made months ago. i had a years worth of wegeners-like symptoms, and i've seen countless ENTs and Rheumatologists. my symptoms were always mild, so while the docs were concerned, they still didnt consider it enough evidence. afterall, all the my blood tests were normal. they tried to say "oh maybe its an allergy". i know what an allergy feels like. its itchy, watery, etc. not to mention, typically responds to allergy meds. well, mine is more like an inflamed feeling in my nose, sinues, pinkeye (which the eye part DOES seem allergic because kicking my cat out of the room has nearly stopped my eye issues), shortness of breath, roaming muscle pains....
the scariest thing was the nasal bloody mess i had going on. but it suddenly stopped after 3 months. most of my symptoms have pretty much stopped after months of being active. thats great and all, but its still affecting my poor ears. they ache, feel full, and ring. my last ENT ran me thru tests and said my ears look totally healthy. i still think i have a very mild flaring form of the disease. Docs are not convinced. they think i would be much sicker if i had wegs.
its going to be even harder to get relief bcause the visible symptoms like pink eyes and nose ulcers vanished. and you cant "see" my ear discomfort or the occasional fleeting nose and sinus pain.
they think i'm a hypochondriac at this point. i dont know where to go from here. i feel like i'm letting something fester and may cause damage over time. i also cant keep spending money and missing work to see doctors who blow me off. what would be your advice? right now i'm just taking lots of antiinflammatory herbs and maybe thats why my symptoms improved, i dont know.

The usual advice is to get to one of Wegener's specialty clinic and see what they say. Most like the Mayo Clinic in Rochester, MN specialize in figuring out cases that are difficult to diagnose and/or difficult to treat. After such an evaluation you should be able to get a more definitive diagnosis and treatment plan and have less worry.

[Geoff]

Hi NicoleB, like you the Docs said I had an allergy and looking back over the years I had 'fleeting' syptoms for about 2 years before the dam burst. Keep a diary of your syptoms as I felt very self conscious trying to describe the odd things that were going on in my pre diagnosis life. Ringing in my ears was the very first sign. Try stopping the herbs and monitor the reaction. Write it all down. Keep us informed and good luck!!

[LilyPony]

Just wanted to let you know that I was/am in the same boat. I had no idea what was wrong and it took at least a year of an eye swollen nearly shut to get it biopsied. It was suggestive of wegs, definitely a vasculitis of some sort. I'm anca negative and my bloodwork has always been normal or slightly off. It was totally under control for many years until I was pregnant and stopped septra. It flared up, prednisone got it pretty well under control, then another pregnancy right after set it off again (2 1/2 yrs ago). I'm slowly building up to be worse than ever with sinus and ear involvement now too. Every step of the way, every single doctor has searched for every possible thing other than any type of vasculitis. I am not taken seriously because of my bloodwork. Never mind that my nose has been bleeding for months now. Even the rhuemy that I thought would really be able to help hasn't. I'm trying to get an appointment at JH now, hoping that current GP will actually follow through on my attempts to be seen by experts. So you're not alone - I think every person on here has probably experienced some degree of skepticism from docs at some point. Those of us with milder more ambiguous symptoms probably get it worst! hang in there

[Chris G]

Don't give up Nicole. We have to advocate for ourselves with a disease like this. It took me 3 years to get a diagnosis. In 2007, I was pretty sure that I had WG based on the extensive research I did myself, when it seemed no one believed me. You need to find a doctor who is familiar with the disease, if not an expert. I've noticed that the "old timers" on this site (and I say that affectionately) will tell you to go to a vasculitis center, and I think it's good advice.

Your story sounds SO much like mine. The local rheymy (and his partner) used the exact same words......."you'd be a lot sicker if you had WG".......followed by..... "I'm sorry, I don't see any evidence of active disease", and then sent me on my way! It's was infuriating, and still makes me angry when I think about it. Fortunately my internist didn't think I was a hypochondriac, and with her help, I got an appt with rheumys at University of Michigan.

Like you, I think I have a rather slow progressing disease, and it is currently limited to my head and neck. My first real flare was in the late fall of 2007, and it mysteriously cleared up on it's own, in about Feb. of 08. It was quiet until June of 2010, when my eustachian tube again stopped functioning (giving me that "full" feeling), and I began to feel very fatigued. I knew that it was returning. All through the summer, my symptoms were limited to my ear. In October,my nose began hurting, I was short of breath, and kept losing my voice. That's when my internist helped me get the appt with the rheumys at U of M. But the appointment was still 6 weeks away, and before my appointment came, my ear got much worse. The day before my appointment, my ear literally erupted with the most horrifyingly painful infection - my mastoid bones were full of fluid, the drum perforated, and my ear literally dripped fluid for nearly 10 days. The pain was so intense that none of the pain pills they gave me even took the edge off. The "fullness" you feel in your ears, can lead to a serious infection........please don't let it get worse.

If you haven't kept notes, write down every symptom you can remember, and try to get an appt with a real specialist - if you can't get to a vasculitis center, then at least try a major medical center. Even if you're in some kind of remission now, a real specialist will recognize your symptoms, and they'll know that this lull is probably temporary.

For me, getting a diagnosis was such a struggle, that when I was finally diagnosed in November, I was SO happy! Happy to have WG. Really.....isn't that sad and ridiculous???

Please don't feel self-conscious! You're not crazy! Find someone who will listen. Don't give up.
Chris

[NicShaf]

Hey NicoleB. This quote sounds much like me. They were playing with the thought of Wegs with me. After They told me i googled Wegs and thought myself that if i had it i would be very sick. I didnt know you could have a limited form of the disease.

Good luck and keep pressing for answers.

I agree with freakyschizogirl, this line struck me too. My doctor said the day she admitted me into the hospital "something else is wrong, you don't look sick". And two days later, still not looking or feeling "sick", actaully feeling pretty good, I was diagnosed with Wegs.
If you feel something isn't right, keep pushing your doctors. I hope they can get you on the road to recovery very soon! Best of luck!

[NicShaf]

NicoleB....Docs are not convinced. they think i would be much sicker if i had wegs.

This is the quote I was talking about...oooops.

[Sangye]

NicoleB, you really need to get to a vasculitis center. Where are you located? Your docs are clueless if they're saying you'd be sicker. I was extremely sick, weak, coughing up blood clots and non-Wegs specialists at JHU (otherwise excellent docs) told me I "didn't look sick enough for it to be Wegs." Dr Seo was livid when he found out.

[elephant]

Nicole, that is how my symtoms started in 2007, and just got progressively worse. Need to see a Wegeners Specialist and everyone here has some great advice.