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.