After 9 years with a Meniere's Disease diagnosis, now I have been introduced to Cogan's Syndrome as a possible change of diagnosis. The inner ear symptoms of Meniere's and Cogan's apparently are the same. I have total hearing loss both ears since 2005, and an unsuccessful cochlear implant due to fibrous scar tissue in the cochlea (preventing total insertion of the electrode array).
Now I have had a "stroke" in my right eye, damaging the optic nerve with accompanying vision loss.
My blood work shows that I have inflammation elsewhere in my body, but rather than biopsy every organ, including my brain, I am starting on Cellcept (along with prednisone) as an immune suppresant.
I am trying to preserve the rest of my vision and prevent future strokes. However the tradeoff of long-term immunity suppression is difficult to manage.
I go once a month for tests to determine organ damage, cancer or other complications.
I am looking for other people with experience in this process.
Anybody out there?