I am on your site out of sheer panic and at this point-desperation. Two days ago I saw an allergist/immunologist at VCU in Richmond for swelling of the tongue. He interviewed me and then tells me "I just do not believe I'll be able to figure this one out." This problem-including doctors like this-has been going on for just over 5 years with no known cause. My primary care tried to treat it as an allergy for the first four years (same with the emergency room), but it turned out I had no allergies. Prednisone did absolutely nothing for the swelling during two weeks of taking it. Antihistamines do nothing. Nothing alleviates the swelling. It has been progressive in nature. Episodes getting closer together and longer in duration. It affects my vision, and taste buds. I was tested last year for immunology issues by an ENT. She also did a tongue biopsy and checked for amyloidosis. Negative. She had a CT scan done also, negative as well. All good news so far, but my tongue had swelled up last October to the point I was afraid I would not wake up due to suffocation and my child would have to deal with it, so...on the couch at my mother's house propped up on pillows to sleep for the next 8 months with my humongous tongue. At least the swelling would go down some during the afternoon most days. Along with the tongue thing, I had bouts of extreme abdominal pain (appendix removed on July 2 this year-ragged polyp growing in an otherwise healthy appendix-very rare and would have definitely turned into cancer within a couple years or so). I was told this was not the source of pain-but, it has not come back since-good news again. My GP, gynecologist and ER would have killed me had I not been extremely insistent. My ENT believed I had amyloidosis-an oncologist in Norfolk took me in and farmed me out to various specialists until the rest of my problems (the tongue, because we ruled out amyloidosis) was out of his field. He truly saved my life and my sanity. Turns out there were three things causing a lot of my abdominal pain-not one of them had to do with being a single mother, as was suggested by practically every doctor I had seen up until then. So, here I am-not wanting to wait until the true problem "presents itself"-because I'm concerned if I do, I may never recover from the problem. I'm game for ideas, speculations, any one gone through this? The swelling is symmetrical. What kind of doctor, and where, would you go? I am willing to travel at this point if my insurance will cover the medical visit. I've been crying since my VCU visit. I'm not accustomed to feeling so down-this guy was the last on the list to attempt to figure this out. I'm lost and nearly alone. I've had debilitating exhaustion periodically for several years so have lost contact with most friends, I managed to stay fit in spite of it but had overwhelming painful bouts with my then mystery ab pain. I still felt lucky in spite of it all until Dr. Negativity got hold of me this week. Such a downer! I feel this is small compared to what I've read on this forum. I've always known tongue swelling is really bad. I am just hoping to find treatment as fast as possible. Thanks ahead of time for any help and consideration. I hope I did not make this post too confusing-it's a lot of stuff to put in here in this frustrated state of mind. Regards, Casey