... with completely irresponsible deafness to one ear and almost complete deafness to the other. It started with my eyes then my ears. I was being treated for Ménière’s disease with sudden hearing loss and vertigo.But I knew there was more going on with me. I felt as though I was dying. Sort of a flu feeling all of the time. And the banging sounds in my ears were enough to drive me crazy! Then you throw in recurring corneal abrasions and I had a real party going on! Before being Dx with Cogans I had pretty much lived on steroids. Steroid eye drops, steroid injections into my eardrums and oral steroids until I stopped responding to them . After being Dx with Cogans the rheumatologist put me on cyclophosphamide 150mg for 3months . Which I had seen and felt improvement with the 1st 2weeks. By the 3rd month I needed to get back prednisone 20mg daily and now he has me on cellcept 500mg twice a day. Most days I still can’t drive and still suffer with unsteady gait with bouts of vertigo.My rheumatologist has encouraged me to reach out to others with condition because there is so little research out there. And he has never treated anyone with it and actually told me he never thought he would! There are plenty more details that I haven’t added in but I feel like I can go on forever . Guess I’d really like to know where you guys are with the condition and have you ever gotten back to “normal” state? And do you recommend any facility anywhere in the US that specializes in this condition?
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