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:tongue1:) 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.:smile1:
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.

[marlo511]

I've been to two vasculitis centers -- Mayo and Cleveland -- and basically told it seems unlikely because I'm not sick enough at the moment. I've done the reading and I understand why it's difficult to diagnose, but that doesn't make one worry any less about it suddenly coming on with a vengeance. I articulated that fear and was surprised to have it summarily dismissed at Mayo with a "Well, you can't live in fear." And that was from a Wegener's expert. Don't even get me started on the two days I wasted there for a rheumatology appointment. I had great expectations for the vasculitis centers, but I guess they can only do so much.

Having been to these two centers, I will share my opinion that I thought the Cleveland Clinic was much more thorough in the exam and in reviewing reports and just spending time with me. I was impressed. I had 20 minutes at Mayo in an appointment that started with "Nice to see you again" when it was my first time there. It might sound petty, but when I'm driving hundreds of miles, taking time from work and spending a great deal of money, I do expect the doc to take 5 minutes and read the referral from his colleague.

Both places have said the pieces don't fit exactly and my currently mild symptoms seem to suggest it may not be. And then say that, of course, they can't rule it and "let's see what happens." Very frustrating to have to wait for bad stuff to happen to figure out what may (or may not be) going on ....

This is my first post. I've been reading -- and learning a great deal here! -- for weeks. Thanks to all of you for sharing your experiences. (My issue started in Nov. with 3 weeks of hard, non-productive coughing, lung inflammation/crackling, followed by pleurisy, two sinus infections and ear pain and ringing. Lost 30 pounds. Antiobiotics did little, only steroids made things better. The ANCA panel my doc ordered showed slightly elevated PR3 with atypical ANCA 1:320 and started the journey down this path. Mayo ANCA panel showed negative PR3 and positive pANCA. Now just have lingering sinus congestion, full ears and had a Raynaud's-like episode (a first for me) a few days after tapering down on my third round of steroids. Blood work showed borderline ANA and Sjogren's so I don't know if this is a question of Wegener's or figuring out another AI disease in play ... or clinging to hope that it was just a nasty virus/string of bad luck this winter tied to have a very germy pre-schooler in the house!)

[Geoff]

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???


Chris I know exactly what where you are coming from. Check out my 'story'...'Glad to be diagnosed' I was so Happy??!!

[drz]

I've been to two vasculitis centers -- Mayo and Cleveland -- and basically told it seems unlikely because I'm not sick enough at the moment. I've done the reading and I understand why it's difficult to diagnose, but that doesn't make one worry any less about it suddenly coming on with a vengeance. I articulated that fear and was surprised to have it summarily dismissed at Mayo with a "Well, you can't live in fear." And that was from a Wegener's expert. Don't even get me started on the two days I wasted there for a rheumatology appointment. I had great expectations for the vasculitis centers, but I guess they can only do so much.

Having been to these two centers, I will share my opinion that I thought the Cleveland Clinic was much more thorough in the exam and in reviewing reports and just spending time with me. I was impressed. I had 20 minutes at Mayo in an appointment that started with "Nice to see you again" when it was my first time there. It might sound petty, but when I'm driving hundreds of miles, taking time from work and spending a great deal of money, I do expect the doc to take 5 minutes and read the referral from his colleague.

Both places have said the pieces don't fit exactly and my currently mild symptoms seem to suggest it may not be. And then say that, of course, they can't rule it and "let's see what happens." Very frustrating to have to wait for bad stuff to happen to figure out what may (or may not be) going on ....

This is my first post. I've been reading -- and learning a great deal here! -- for weeks. Thanks to all of you for sharing your experiences. (My issue started in Nov. with 3 weeks of hard, non-productive coughing, lung inflammation/crackling, followed by pleurisy, two sinus infections and ear pain and ringing. Lost 30 pounds. Antiobiotics did little, only steroids made things better. The ANCA panel my doc ordered showed slightly elevated PR3 with atypical ANCA 1:320 and started the journey down this path. Mayo ANCA panel showed negative PR3 and positive pANCA. Now just have lingering sinus congestion, full ears and had a Raynaud's-like episode (a first for me) a few days after tapering down on my third round of steroids. Blood work showed borderline ANA and Sjogren's so I don't know if this is a question of Wegener's or figuring out another AI disease in play ... or clinging to hope that it was just a nasty virus/string of bad luck this winter tied to have a very germy pre-schooler in the house!)

WOW! What a tough situation!
At least no one here will tell you to go a vasculitis specialist for answers.
The question now is how to cope with this uncertainty.

[Chris G]

Oh my gosh Marlo.....what a disappointing situation that must have been for you. Keep a close vigil on your symptoms & keep thorough notes. I'm a big believer that we have to advocate strongly for ourselves. When it feels like no one believes you, try not to let it get you down. I think it's happened to most of us (small consolation, I know). Keep your chin up!

[JanW]

I went undiagnosed for years (since 2005, dx in 2010) and never got 'really' sick -- just ended up with mobility problems and ankle swelling which led to the blood tests and positive c-ANCA results, but had bad stenosis (narrowing of windpipe) for several of those years. I was put into remission with a low dose of mtx and no steroids pretty quickly (within a few months), and had surgery on the windpipe (another story). One of the worst things that happened to me was the bridge of my nose collapsed, but it was also one of the best things since it is so strongly correlated with WG. All of this is only to say that while you should continue to seek dx, you may not be like a 'ticking time bomb' meaning that you won't necessarily get very sick, have organ failure, or do permanent damage to yourself if it takes you a while to get treatment. Just throwing that out there. I'm fine now except for lingering problems with my foot, but that's really a pretty minor thing. I got healthy in treatment very quickly.

[delorisdoe]

[Having been to these two centers, I will share my opinion that I thought the Cleveland Clinic was much more thorough in the exam and in reviewing reports and just spending time with me. I was impressed. I had 20 minutes at Mayo in an appointment that started with "Nice to see you again" when it was my first time there. It might sound petty, but when I'm driving hundreds of miles, taking time from work and spending a great deal of money, I do expect the doc to take 5 minutes and read the referral from his colleague.


when i was diagnosed I had a "team" of doctors that was to be treating me. when I met one of these doctors not only was she 1 hour late for the day but she closed the door, sat down with her resident and started to tell me about lupus and the treatment for my lupus? Her resident kept trying to interupt but she would not allow him to. Finally i interupted and said "I have lupus too"???? she asked the resident what it was i had. lol. when i told my diagnosis doctor about it he removed her from the group and said "we wont bother with her anymore". She was primarily a lupus doctor. i was suprised that she did not clue in as i was her only wg patient of the day.

[marlo511]

Finally i interupted and said "I have lupus too"????

Too funny! Have to keep them on their toes!

[Sangye]

Hi marlo, I'm glad you joined our group. I agree with JanW that there is no need to feel like a ticking time bomb.

I have to trust the conclusions of 2 excellent vasculitis centers. I know that is probably not what you want to hear though, and I understand your frustration. I wonder if you've contacted them again to let them know how your symptoms worsen with tapering pred. You might have looked clinically stable when you saw them.

Also, something you may not know is that Mayo's lab work is considered far more accurate than local labs. They do their own assaying and are quite famous for the quality of work. So I would trust their (-) PR3 over the local lab results. When I went to Mayo Arizona, my rheumy insisted on me doing my ANCA blood draws on-site every 3 months. It was a 3-hr (one way) drive across the desert and I was in seriously bad shape.

Though I am technically-sorta-kinda in remission, I still have numerous symptoms. The key with Wegs is what types of symptoms, how bad they are, and if they're worsening. I remember feeling very put-off once when I told Dr Seo (JHU) about some troubling symptom and he said "I can live with that." I was like "But you're not living with it, I am!" It took me awhile to hear his explanation-- that oftentimes with Wegs you have to accept living with a number of low-level symptoms that do not reflect active disease. Periodically I check my BVAS score (http://rarediseasesnetwork.epi.usf.edu/vcrc/documents/BVAS%20Assessment%20Training%20Manual.pdf) on my own when I get worried about this symptom or that. I can't even tell you how many times, and for how many symptoms Dr Seo and my other Wegs docs at JHU have said we just need to "wait and see." You can't jump on every symptom or hit it with meds. I was justifiably overly anxious about every symptom for a long time. Now I've seen how many symptoms just ebb and flow on their own, many completely disappearing as mysteriously as they came.

[elephant]

Hi Marlo, who did you see at Cleveland Clinic? Did they have you pee in a cup to check your kidneys? Did they do a CT of your lungs. I had the same exact symtoms when I started out with WG ( I actually had WG all my life and didn't know it long story) in 2007. I also had severe joint pain along with the sinus/ear/eye symtoms. Just keep a journal of your symtoms and let the docs know what is going on.
I agree with Sangye.

[Jack]

Good post Sangye. :thumbup:
I sympathise with the docs who are faced with inconclusive symptoms and test results. Do you wait for something more specific (serious?) to develop or begin treatment with a regimen of dangerous drugs that could kill the patient? I think I would be one of those who said wait and see.

[aewaustin]

Maybe this will help to put your mind at ease a little bit. When I was diagnosed in 1992 my Weg's was so bad that the first doctor, a dermatologist, was able to guess that it was Weg's. I had severe sinus, kidney and vasculitis symptoms that came on in full force within about two weeks of my having Weg's. Long story, but I was in college and I did not move too fast on it... It started in March and from June to July I lost 20% of my kidney function, then I went on CTX in July and ended up in remission by 1994. I have not been on any drugs since, but now am flaring since December 2010 and waiting to get approved for RTX in the next few weeks. The flare came on pretty fast, and it is very obvious that I am flaring, blood in UA went from 1+ to 4+...

I was symptom free from 1994-2003 and then in 2003 to November of 2010 I had symptoms... I had trace to 1+ blood in my urine and I could feel it in my legs. The leg thing is a weird thing I have and on a pain scale of 1-10 it ranked about a .5. So I just dealt with it and waited for it to get worse, from 2003-2010 I did two Ironman triathlons and numerous 1/2 marathons and a marathon. So while you want to keep on it and aware (I would make sure to do UA's bi-annually or when I felt like I was off), do know that it can just be under the surface and not explode like a ticking time bomb.

[NicoleB]

i wanna let people know that i HAVE seen a vaculitis specialist. Dr. Merckels group in Boston. when i first emailed them with my sypmtoms, they told me to come in. but after looking at me, and my bloodwork, basically said "you have suggestive symptoms but not enough evidence to be putting you thru harsh meds".

so thats where i'm at. that was 8 months ago. i go back to an ENT in the same hospital to check up on a septoplasty i had, and i'm going to bring up the ears again. its hard to sleep when my ears hurt and they screech at me.

i've probably seen 2 rheumy's and 6 ENTs :(

[LisaMarie]

Nicole
I can relate to your fustrations....i ho back to Mayo in May to be.looked at agsin on 10mg of prednisone...i always have problems at 20...i will see ent then too....it should be an interesting ride....
if i get too sick they want me admitted to St Mary s by Mayo....problem.is iI've in missouri..hope things get better for u

[Chris G]

Nicole - what part of your ears hurt? I had similar screeching while my ear infection was at its worst. And it felt like someone had their hands around my ear canal, and was wringing it out.

[drz]

Though I am technically-sorta-kinda in remission, I still have numerous symptoms. The key with Wegs is what types of symptoms, how bad they are, and if they're worsening. I remember feeling very put-off once when I told Dr Seo (JHU) about some troubling symptom and he said "I can live with that." I was like "But you're not living with it, I am!" It took me awhile to hear his explanation-- that oftentimes with Wegs you have to accept living with a number of low-level symptoms that do not reflect active disease. Periodically I check my BVAS score (http://rarediseasesnetwork.epi.usf.edu/vcrc/documents/BVAS%20Assessment%20Training%20Manual.pdf) on my own when I get worried about this symptom or that. I can't even tell you how many times, and for how many symptoms Dr Seo and my other Wegs docs at JHU have said we just need to "wait and see." You can't jump on every symptom or hit it with meds. I was justifiably overly anxious about every symptom for a long time. Now I've seen how many symptoms just ebb and flow on their own, many completely disappearing as mysteriously as they came.

Sangye; I found this quote very helpful since it summarizes very well some of my feelings. I was diagnosed 11 months ago when at death's door and had to have very intense treatment to survive. When I finally improved enough to get out of the hospital into rehab facility I became very anxious whenever I had an up turn in symptoms and had to go back to the hospital for inpatient care. I was fearful I was going to end up having to go through the whole treatment ordeal of intubation and weeks of intense treatment or end up on dialysis from kidney failure or some other serious complication. I did have several returns for inpatient care but they ended up being much shorter and with milder treatment and longer periods of time between admissions. My last one was just before Thanksgiving and was able to get the care done locally with consultation from my treating rheumatologist. This has helped me become less fearful about the residual symptoms that persist since to quote you my doctors tell me I am technically-sorta-kinda in a drug induced remission with an amazing recovery from my low point at diagnosis. I also have had trouble accepting that this may be a good as i am likely to get since the damage from the Wegener's and residual symptoms are an inconvenience much of the time. This forum and many posts here are helping me come to terms and acceptance of my new limitations.

I can certainly empathize with others who feel anxious about the uncertainty of any remission and the appearance of new symptoms or even the persistence of old symptoms. Wegener's disease is very unpredictable and requires close monitoring to make sure it doesn't get away and run wild but our treating doctors do not wish to do us any harm, and over treating symptoms that they view as minor can be dangerous. It is a balancing act than is ever changing and our job to to help our doctor find the balancing point for each of us.

[NicoleB]

this is a reply for ChrisG. (havnt figured out how to reply the right way)

my ears have a dull ache deeper in my head (behind the ear drum) it feels like the pressure is off, but i can pinch my nose and blow, and the air moves into my ears fairly normally, but the more painful ear takes a little longer to pop. its annoying because the pressure and ache sometimes covers the whole half of my ear and face. this has been going on for nearly 8 months now (comes and goes)

anyway, the tinnitus came on very suddenly in both ears. a very high pitched beeping. sometimes even pulsing. if i roll over in bed, the sound sometimes changes as more blood moves to that side. thats how i know the tinnitus is somehow blood-flow related. yawning or moving my head changes the pitch.

i consider my symptoms to have come on a year and 4 months ago. but when i really think back, 4 years ago, one of my ears started pulsing and it woke me up from a dead sleep. when the pulsing stopped, i was left with tinnitus that lasted 2 years. then it stopped. now here i am, 2 years later, and my ears are screwy again. my first ENT told me it was just probably TMJ syndrome. it is true that i do have jaw problems but that wouldnt explain all my other inflammations.

[Chris G]

Nicole -
Your entire story sounds very much like mine, including symptoms, remission, doctors who wouldn't listen....
I re-read your original post, and it sounds like you either flared (for the first time) a couple of years ago, and then had a period of remission.......or you've had ongoing mild symptoms for years (maybe both). Of course, I'm no doctor, but it almost sounds like you're at the end of another flare, that may be clearing up on its own. And your ears are the last thing to clear up. Does that make sense? (My first flare, in 2007/2008 disappeared on its own after about 4 months). It sounds very familiar to me, because my "plugged" ears were the FIRST symptom to appear, and the LAST to clear up.

My most CONSISTENT symptom (from one flare to another), has been the eustachian tube dysfunction, which left untreated for a long period of time, caused me real problems this time around. My last flare, which began in June of last year started simply, with dysfunction in the right ear - plugged, wouldn't open, tinnitis, fluid build-up, loss of hearing, feeling of tons of pressure on the right side of my head, and down my neck. Some days it made my jaw hurt as well. An ENT offered to place an ear tube, but I declined, knowing that I would see the rheumatologists soon (and hopefully be diagnosed and begin treatment). As I mentioned earlier, the night before my rheumy appt, my ear erupted. So, while it was the most excruciating thing I can remember feeling, I also wonder........ if I hadn't been sitting in front of them crying from the pain, whether I'd have been taken as seriously, or if they'd have thought, yeah, she has a long list of weg type symptoms, but "she doesn't look sick enough".

Anyhow, I know how scary & frustrating it is to "wait and see", and I'm sorry you're going through it.

How have your symptoms been these past few days?

[NicoleB]

i had some left over antibiotics i decided to pop and it almost seems like the pain subsided a little, but there is still pressure. my tubes are still open because i can blow air in and out, though, a few months ago, they would open slowly and sounded like velcro being pulled apart. its mostly just one ear, though they both ring. my ENT who works in the same hospital as a major vasculits center, tested the pressure of my ears and said they were normal.
so, all i can think is, there is some inflammation thats there, but not totally closing my ears. i'm just so sick of "maybe its allergies"
no, its not. i'm 99% sure of that. why would i have "allergies" in just ONE eye and ONE ear? i've had mild allergies before, it they feel itchy and watery. this is different. not to mention, i've never had any relief from antihistamines. i still have 2 weeks till my next appointment. i'm not at hte point where i'm crying from pain, but i'm certainly crying out of hopelessness and lack of sleep. maybe i'll turn on the waterworks for them.

[Chris G]

ahhh, yes......allergies. All last summer, while my ear was plugged, getting worse, and other symptoms were developing quickly, I was told that it could just be allergies. I wanted to scream "I know what allergies feel like - and this is not it !!"

BTW, If you feel the need to blow air into your ear, then I'm not sure that your tube is actually open & functioning. If they were working properly, the pressure would be equalizing on its own without you even noticing. Mine was functioning normally until my pred was lowered recently. Now, my tube is not regulating the pressure normally. I find myself swallowing extra hard, or doing an exaggerated yawn now and then. When that doesn't work, and it sounds like my head is in a bucket, I blow a tiny bit of air in, to pop it manually - but sometimes that hurts, so I try not to do it often.

What type of doc do you see in 2 weeks? Also, I noticed you had a septoplasty. Doesn't any of the docs wonder why your septum deviated???

[NicoleB]

my ENT is in BMC in BOston, which is also a lead vaculitis center. i saw one of their rheumy's and he gave me the "watch and wait" game too. didnt think my blood was abnormal enough.

my septum was deviated since i was a young teenager, and i think it was from an upper jaw surgery i had many years ago. but thats how they saw my deviated septum in the first place, because of my multiple ENT visits. basically, he said "i dont know whats causing your inflammation. could be allergies or very early wegeners. but your septum is so deviated that your nose is super dry in one spot and its aggravating everything and making it hard to heal" he then said if my nasal ulcer doesnt come back, i could go ahead with the septum surgery. i'll have to admit, part of why i wanted it done, was the fact that my nose was ugly and crooked and i knew it would help the appearence too. i feared a flare from the surgery, but nothing happened. i was good for a long time. now its all coming back again.

[NicoleB]

sorry to ramble, i just got off the phone with my rheumy. all he could say was i had Hashimotos (thyroid) antibodies, and mildly positive ANA. everything else is good. he keeps bringing up my mild nail psoriasis and thinking maybe that is getting into my joints and causing problems. i've never had arthritis!!!! he's so wrapped up in my nails, when i'm trying to explain that something is eating my ears and nose! agh! i started crying that i was in pain and he's willing to see me this week. fingers crossed i get some relief. i'd be willing to do a trial of pred just to see what happens. lord knows i've tried everying else.

[Chris G]

Great, I'm glad he's seeing you this week. This doc is a WG specialist (@ BMU), right? or at least really well versed in it? Not just a garden-variety, local rheumy? I'm surprised they haven't at least tried a Medrol Dose Pack, or just a low dose, short round of pred on you - a short round will not do you any harm. Knowing whether your symptoms clear up or improve while on pred, is somewhat helpful toward making a diagnosis. Keep him on task when you see him. If your nose and ears are your biggest complaints, don't let him stray.

Just wondering - does ibuprofen give you any relief at all? I mean higher doses of it, 600-800 mg. Early on in my last flare, it helped a bit. I thought it was so funny that it made my nose less stuffy - as if I had taken decongestant. But, it also indicated that the stuffiness was caused by inflammation, rather than allergies.

[NicoleB]

i see two doctors. this guy is a normal rheumy who called me up because he heard i was requesting my bloodwork to bring to the ENT. he's local, whereas boston is a hike and i have to miss work.
the other doctor is an ENT who works in a vaculitis center (boston). i've also seen an actual vasculitis doctor in the same building who didnt have any real answers. Ibuprofen helps my ears a little, you know, just masking things. i have no conjestion. i had a different ENT last year who prescribed me a 5 day taper pack of pred but i think it was too quick to see results. not to mention, it gave me terrible leg cramps so it was hard to focus on anything else. i might try to ask again.

[LisaMarie]

Just wondering if you have found anything out lately???? and if you are feeling better?

[NicoleB]

well, saw my ENT (who works at a hospital with a big vasculitis center) and he did the whole camera-up-the nose, and said everything looked good! which is frusterating because it doesnt FEEL good. he knows that. he knows my ears hurt too. but said they looked perfect. so at this point, he gave me some ointment for the burning dryness, and i've gone back to using flonase and advair and they honestly DO help alot.

i'm still not convinced i have simple allergies or asthma, but these are inhaled steroid drugs, and since my "mystery wegeners" seems to be localized mainly to those areas, i guess its keeping it somewhat under control until i can find out more. i just dont want to damage any body parts in the waiting game.