Hi Casey, we're not physicians, but we have learned a bit about how to deal with them. There's a reason they get paid the big bucks. When they look at a swollen tongue they have a long list of things it could be. Their investigation is based on the signs and symptoms, the test results, your risk factors, previous illnesses, all that. Some causes are more likely than others, so they investigate those first. Sometimes, the cause is not obvious, and sometimes as you've found, the symptoms have to develop before you can really identify what it is. Remember Ebola starts with a headache, but not all headaches at Ebola. They need other signs and symptoms (and risk factors) before they can diagnose it.

So what do you do? Of course you keep looking, and the field I would be looking for is the ENT surgeon. You go back to hims and say ok its not Amyloidosis, so what is it? I'm not making this up, its life threatening and causing me a lot of distress, what do I do? And from there you'll have your next course of action.

Thats what I'd do next time I spoke to an ENT. Now until then, I would be focusing on what you can control, and that includes keeping yourself calm, relaxed and rational. Easier said than done, but thats the mission. Your family doctor should be able to help you do that.

Best wishes, hope you find the answers soon.