Discussions By Condition: I cannot get a diagnosis.

Wegener's Disease? Please help me.

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: mishima
  • November 7, 2008
  • 11:22 PM

hello, my name is michelle, and i'm here for my husband.
he's worried he has wegener's disease.
it all started a few months ago when we were living in germany, he got episcleritis, a very rare infection of the eye(s) which affects the vision, makes trouble with focusing, trouble with shifting from light to dark, and can be painful. his worst complaint was that he had double vision or saw something like tracers (slow shadow following everything when you move your head.) he also desrcibed it by asking "you know when it's really hot outside and you can see steam or a heat wave burning in the air, and you look in it and everything is sort of dizzy?" i hope that makes sense.
he wasn't sure why he had it, but it lasted for over 2 weeks. sometime during the infection, he also developed a popping/clicking sound in his ears. they never stopped. it was constant pop-pop-click-click. i even put my ear next to his to hear it, and it's literally constant. some are saying this has to do with a tube dysfunction. he also complained of constant, daily pressure on his temple(s).
we visited many many different kinds of doctors. we checked for MS, got an MRI and a CT, we thought it was graves disease (a thyroid disease), morbus crohn disease (a digestive system disease), sinusitis, we went to 5 eye doctors, 2 ear-nose-and throat doctors and we basically never got an answer besides him having episcleritis. they never concluded anything about his ears or temples. they did, however, see a shadowy ... thing? around his sinus area on the MRI, but concluded it might be sinusitis. when he checked for it, the doctors couldn't find any sinus problems (i'm guessing maybe it went away like a chronic sinitis?)
while the eye infection (episcleritis) went away, the other symptoms stayed, and after about 2.5 months, we've moved to america, and suddenly he's having problems with his eyes again. he's feeling pressure and piercing pain around and behind his eye, along with the pressure in his temples and clicking in his ears. he also mentioned something about chest pain, but i don't think that was too strong.
we went to a ear-nose-throat doctor today, again, and he said it looks like a sinus infection, but he said it doesn't rule out wegener's disease.
what we read online was that the combination of rare episcleritis + sinusitis is only seen in wegener's. i feel my heart fall and my stomach sink when i put together the conclusion. i'm horrified for my husband...
i don't know what to do or how to tell if this is wegener's disease. most peoples' experiences i've read sound like everything started falling apart quickly. i'm worried it's going to happen to him, too, because like all the other wegener's victims, he's been to so many different doctors, and never got any real help since it's hard to diagnos and it's so rare.
if you know about wegener's disease, please tell me everything about it, help me understand if what he's going through can be wegener's or if he's just overreacting, or just any information. anything would be greatly greatly appreciated, because i am desperate and we're both not able to sleep from worry :(
thank you very much, and if you have this disease, i'm truly very sorry and my heart goes out to you, sincerely.

thanks again.

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  • hello, my name is michelle, and i'm here for my husband. he's worried he has wegener's disease.it all started a few months ago when we were living in germany, he got episcleritis, a very rare infection of the eye(s) which affects the vision, makes trouble with focusing, trouble with shifting from light to dark, and can be painful. his worst complaint was that he had double vision or saw something like tracers (slow shadow following everything when you move your head.) he also desrcibed it by asking "you know when it's really hot outside and you can see steam or a heat wave burning in the air, and you look in it and everything is sort of dizzy?" i hope that makes sense.he wasn't sure why he had it, but it lasted for over 2 weeks. sometime during the infection, he also developed a popping/clicking sound in his ears. they never stopped. it was constant pop-pop-click-click. i even put my ear next to his to hear it, and it's literally constant. some are saying this has to do with a tube dysfunction. he also complained of constant, daily pressure on his temple(s).we visited many many different kinds of doctors. we checked for MS, got an MRI and a CT, we thought it was graves disease (a thyroid disease), morbus crohn disease (a digestive system disease), sinusitis, we went to 5 eye doctors, 2 ear-nose-and throat doctors and we basically never got an answer besides him having episcleritis. they never concluded anything about his ears or temples. they did, however, see a shadowy ... thing? around his sinus area on the MRI, but concluded it might be sinusitis. when he checked for it, the doctors couldn't find any sinus problems (i'm guessing maybe it went away like a chronic sinitis?)while the eye infection (episcleritis) went away, the other symptoms stayed, and after about 2.5 months, we've moved to america, and suddenly he's having problems with his eyes again. he's feeling pressure and piercing pain around and behind his eye, along with the pressure in his temples and clicking in his ears. he also mentioned something about chest pain, but i don't think that was too strong.we went to a ear-nose-throat doctor today, again, and he said it looks like a sinus infection, but he said it doesn't rule out wegener's disease. what we read online was that the combination of rare episcleritis + sinusitis is only seen in wegener's. i feel my heart fall and my stomach sink when i put together the conclusion. i'm horrified for my husband...i don't know what to do or how to tell if this is wegener's disease. most peoples' experiences i've read sound like everything started falling apart quickly. i'm worried it's going to happen to him, too, because like all the other wegener's victims, he's been to so many different doctors, and never got any real help since it's hard to diagnos and it's so rare.if you know about wegener's disease, please tell me everything about it, help me understand if what he's going through can be wegener's or if he's just overreacting, or just any information. anything would be greatly greatly appreciated, because i am desperate and we're both not able to sleep from worry :(thank you very much, and if you have this disease, i'm truly very sorry and my heart goes out to you, sincerely. thanks again.one for sure way of diagnosing is by a biopsy of a granuloma. I was diagnosed at 16 with Wegener's which is very uncommon. It wasn't until I had a major flair up that it was noticed and I happened to see an ENT who kind of pulled the diagnosis out of his *ahem. But it did fit. I had blood tests run and a biopsy to confirm the results. This disease can be ugly, but mine tended to be somwhat slow moving as my symptoms slowly progressed for about 3 years. This disease can move fast but it doesn't necesarily have to. I would suggest that you specifically ask for blood tests and CT scans of his head/face and lungs to check for granulomas. If these are found then they can be biopsied. I hope that this info helps in any way. And there is hope, it has been 6 years since I was diagnosed and I went from being extremely sick and almost not graduating high school because of it to having my AA, working a good job and getting married.
    Anonymous 42789 Replies Flag this Response
  • one for sure way of diagnosing is by a biopsy of a granuloma. I was diagnosed at 16 with Wegener's which is very uncommon. It wasn't until I had a major flair up that it was noticed and I happened to see an ENT who kind of pulled the diagnosis out of his *ahem. But it did fit. I had blood tests run and a biopsy to confirm the results. This disease can be ugly, but mine tended to be somwhat slow moving as my symptoms slowly progressed for about 3 years. This disease can move fast but it doesn't necesarily have to. I would suggest that you specifically ask for blood tests and CT scans of his head/face and lungs to check for granulomas. If these are found then they can be biopsied. I hope that this info helps in any way. And there is hope, it has been 6 years since I was diagnosed and I went from being extremely sick and almost not graduating high school because of it to having my AA, working a good job and getting married.Hello MichelleMy name happens to be Michelle as well. My Wegener's Disease symptoms started presenting a couple of months after an operation I had in March 2008, to remove a breast tumor. A runny nose was the first, then "so called" nose infections and sinus infections. Over the next few months I was prescribed several courses of antibiotics which of course were at first only slightly helping to alleviate my condition but were not actually clearing what was, at the time, thought to be nasal and sinus infections. At the same time I started developing skin lesions, in particular, on my hands. I wore gloves most of the time, eventually this condition worsened to the extent that I couldn't even bath myself it was so painful. In addition, I had strange sores developing on my arms and legs. By the end of 2008 I was suffering from severe fatigue. I would fall asleep at any given moment, no matter where I was or what I was doing at the time. I eventually blacked out in my bathroom one morning, and landed face first on my bathroom floor. This of course did not help matters where my nose was concerned. It seemed to increase the pace of the disease. The symptoms increased to night sweats, joint pain, fevers, sores and crusting in and around the nose, earache, facial pain, Conjunctivitis and eye pain, weakness, a cough (more like bark), I developed a weird sound when I was sleeping, which was caused by my airflow being restricted, I get muscle cramps, numbness mainly my toes, chest pains, etc etc. etc At the onset of 2009, my nose started literally falling apart. The pain was so excruciating that I am told that I would cry in my sleep or I would wake up crying. This condition is called a saddle nose deformity. At the beginning of this year, I developed an upper palatial lesion, causing difficulty with eating and drinking, and problems with my speech. The medical practitioners I initially sought help from didn't know what was wrong with me. I in fact was so confused and totally disillusioned, and eventually I even started to feel a little dodgy. If I could help it, I tried not to involve them with every little symptom that cropped up. I wanted to jump out of my body and run away. I had lost my job in April, I'm convinced was because I was ill. This caused an entirely new set of problems being a single mom of two boys who I was still supporting. This additional stress, anxiety and depression, which over a long period time has caused a diminished attention span, diminished concentration and short term memory loss. In August 2009 I couldn't bear being in pain anymore and secretly I felt as if I was dying. I decided that I was going to try out every doctor and specialist in the country until one of them had answers for me. My first stop was an ENT Specialist who I had taken my children to a couple of years prior. About 10 minutes into the consultation, he said he was almost 100% certain of what it was but I needed to undergo a series of medical tests and examinations. He also wanted to discuss my case with a Specialist Physician/ Pulmonologist. In September 2009 I was finally diagnosed with what they suspected was Wegener's Disease. I was placed onto 20mg Pulmison, and 50mg of a nasty little tablet called Imuran. I had such a bad reaction to the Imuran, that I nearly died from the tablet never mind the disease. It was thankfully replaced with 100 mg Endoxan. In February this year the final diagnosis of Wegener's Disease was confirmed. Although I now knew what I had and I was on the medication, I didn't know anything about this disease and had to find out all the information myself...... Thank goodness for the Internet. It was quite a "moment" in my life, when I read that the disease I had, was incurable and could be fatal....The website that helped me the most was that of the Vasculitis Foundation. http://www.vasculitisfoundation.org/wegenersgranulomatosis I am quite certain they will be able to help and advise you. There are also several Vasculitis and Wegeners Disease support groups on Facebook that have helped me to feel a little less alone in the world.... God Bless.
    Anonymous 42789 Replies
    • August 23, 2010
    • 00:11 PM
    • 0
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