Gang, thought I would solicit opinions since my ENT team is stumped so far.
I posted briefly here before: On May 28 I first confirmed hearing loss with an audiologist when first experiencing tinnitus–this was maybe a month after I recovered from walking pneumonia. I’ve seen the ENT there multiple times, and he isn’t sure what’s going on. I’m worried about going completely deaf, because during that time I later 1. Had additional loss in the bad ear followed by oral prednisone which 2. Bumped things back up to initial loss level, followed by 3. A separate inflammation of soft tissue in mouth which my family doctor successfully (90%) treated with prednisone then 4. Another hearing loss in bad ear followed by another round of prednisone which 5. Did not bump things back up this time. In fact, just learned today, my hearing is a bit worse than it was pre this round of prednisone, both in the bad ear and now, for the first time, a decline in my good, right ear.
I have an MRI set for next Monday. I also had an ECoG which showed a fluid imbalance in the bad ear, which led to discussions about lower sodium intake and while I’m pursuing that, my last physicals have measured sodium blood levels in the mid- to low range of normal.
My ENT and I have talked about Meniere’s and Hydrops but I have zero vertigo issues. I wonder a little bit about something called Autoimmune Inner Ear Disease, which at least follows the pattern of often showing up with loss in one ear followed by the other, over a period of weeks or months. The mouth-inflammation thing may indicate autoimmune something or other, but my family doctor ran blood tests for that and whatever autoimmune tests she ran–also Lyme–didn’t show anything.
Anyway thought I would solicit reactions to see if anyone had a similar experience and what they ended up learning. If there is any way to rationally assess whether I’m going to lose it all in both ears, that would be good to know too.
Naturally I have follow-up appointments scheduled but so far it’s been Mystery Science Theatre. I’ll post my audiograms separately.