Autoimmune is the only thing they have not looked at yet. Whatever specialist I see gets to his pet diagnosis and stops there. They are incompletely imperical. Aha, sounds like Menieres. Aha, sounds like labyrinthitis. Aha, sounds like you need a psychiatrist. Aha, sounds like you need more sleep. Aha, sounds like you need Vestibular Rehab therapy, which will resolve all your problems, case closed. I don’t trust them any more; they will have to work with ME and listen to ME, or I will not get the help I really need. I am fed up.
I have been through a saga about a decade long of misdiagnosis, being accused of malingering, etc. etc…the typical vestibular disorder gauntlet. My GP is negotiating with my insurance company to get me in to see some regional specialists so I can stop playing with the local cowboys.
They actually just found a small acoustic schwannoma in one ear, too. Let’s add more mud to the soup, why don’t we. The diagnosing doctor thinks this has nothing to do with my symptoms (! well, good for him). He thinks all my symptoms are due to MAV. He has me on verapamil 80 mg daily, and a migraine diet (his was on a photocopied sheet with misspelled words and the important information left out; I got a clue and bought a book). I have gotten MUCH worse since I have been on this program.
The specialist does not see anyone more often than every six months and isn’t interested in treating acute symptoms. I could go back there in 6 months and be deaf, and he’d go “tough luck.” Apparently he doesn’t think my hearing and ability to work are of much importance. So I returned to my family doctor since the specialist is treating me like a hamster.
I have acute episodes that produce severe inner ear inflammation which can be managed by prednisone. If I don’t manage them I get further hearing and balance damage. I get the prednisone from my asthma doctor and my GP knows how much I am using. I am just fed up. Until I can get some real help, I will help myself. Going to get my GP to get copies of all my audiograms and test reports and then I will get copies and send them out to specialists.
Well, to answer your actual question, my hearing a balance are slowly being destroyed. The right ear is the worst (the one with the acoustic schwannoma). And my vision is just slightly disturbed. It is hard to say what is going on, since the MAV diagnosis can’t be actually confirmed. The location of the schwannoma makes it certain that this is affecting hearing, but is is less likely the vision and balance are affected. So the real answer is that everyone is still guessing, which is the name of the game I have been in for ten years. Guess, guess, guess again.