Is ES really as rare as they say?

Or is it because it's never really looked into? Back in 'the olden days', my Mother suffered for many years w/jaw and neck pain. I think they even told her she had fibro. And of course, because the docs could never find anything, she was probably thought of as a hypochondriac.

So just wondering about it being that rare?


I agree- I think it's a lot more common than the figures, just misdiagnosed! Now people can google their symptoms, and do their own research, I think there'll be more getting diagnosed. How many people on here have diagnosed themselves, and then pushed for the confirmation with scans?

I had been pushing my 'jaw' Doc for quite a while on getting new xrays. I told him - now is the time. He finally said - "I think you're right, we should see what's going on." If I hadn't pushed for this, we'd still be going back and forth. We'd had xrays 4.5 yrs. earlier, and nothing really showed up, so it shows how long they became in that time.

Then began the route of finding a good ENT who dealt w/this, and from there, a ct (soft tissue) of the neck, which confirmed it.

I'm glad you've got medical proof that they grew- be good if your ENT could publish a paper on that, as so many docs believe that they don't grow!!