Posted 7/2/2015 3:24 AM (GMT -6)
Hello everyone. I am writing to you from Melbourne, Australia. I have read hundreds of messages on forums over the past couple of years and especially recently but this is the first time I have actually posted anything.
I am 70, was diagnosed with Raynaud's at age 36, dry eyes at 38, Sjogren's at 40 (but could backdate it to 25), so have been on the chronic disease/depression/fear merry-go-round for many, many years.
What drove me to the ENT this time was a 'new' symptom which occurred about four weeks ago and is terribly isolating and even more depressing than the other numerous symptoms I have. The ENT (who refused to read the page I had typed about my symptoms, would not let me speak and bellowed "I'll ask the questions") diagnosed 'Eustachian tube dysfunction' and offered no help whatsoever. "It'll go away", he said. "Really? Are you sure?" I replied. "No", he said. As an afterthought, as I was walking out the door, he said "Come back in 6 months if you're worse." "You must be joking", I thought. I was wondering if anyone else has experienced a similar progression to mine. In retrospect I realise that this started 10 years ago with a feeling of blockage in my left ear after an hour's practice in a singing group I had recently joined. It want away soon afterwards. Over the following years - not sure how fast - the frequency of this 'blockage' increased. It would happen when singing (which I persevered with despite this and the dry mouth, throat etc. because it was pretty much the only social activity I could manage at all and I live alone). It might also happen when I was talking or maybe washing up - I couldn't work out what was triggering it. Four weeks ago the feeling of blockage was suddenly there all the time, accompanied by autophony (hearing your own voice loudly inside your head, your breathing, your chewing ...) which is soul-destroying and with a worsening of the sensitivity to loud noises (including people with loud voices) that I have also experienced for many years. Talking is difficult; singing is now an agony. The only relief I get from the autophony and 'blockage' is when I lie down or bend down. All of this sounds exactly like patulous (constantly open) Eustachian tube, not ETD, but the ENT said it wasn't (not that I believed him since he didn't have all the information because he wouldn't let me tell him!). I have read people describing similar symptoms but have not found anyone describing a 'blockage' which has progressed in this way from first appearing ten years ago to then, ten years later, becoming constant with autophony. Is there anyone out there like me? Anyone with Sjogren's with a similar experience?
Thank you for reading this.