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

Casey, please understand that this forum is made up of oral cancer patients and caregivers not physicians. We are not qualified to understand whats going on with your intermittent swelling. From what you explained, it does not sound like what you have is not how cancer presents itself. Swelling of the tongue can be life threatening so a trip to the ER or 911 call should be your first reaction.

Best wishes with finding out whats going on. Keep searching until you find the right doctor to help you.

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.

Thank you OzMojo. That is sound advice. I did really like the ENT I started with last Fall-and, it will keep me from feeling like I am just floating around on my own waiting for whatever it may be. Thanks again for your response. Best wishes, Casey

Dear Christine, sure. I know there are no doctors on the forum, I was wanting to know if anyone had a similar experience leading in to other symptoms, knowing that it would not necessarily apply to me. Just looking for direction. I am taking the advice of OzMojo and will phone the ENT I started with initially who felt I had amyloidosis. I have confidence in her even though she said I was beyond her ability to further diagnose, perhaps she could direct me to someone who can. I have had bad luck with doctors just telling me it is nothing because they did not know what was going on, instead of referring me out. This guy at VCU certainly can't be the last DR in that field. I will keep trying. I was just so hoping to get answers before it blew up again. Thanks. I'll be back if I find myself needing your group-I appreciate your response, and wish you all the best. Casey

Casey, the question I believe you are asking is if any of the oral cancer survivors here have experienced severe swelling of the tongue as part of their personal cancer experience. My answer is that I have not, nor have I heard of that happening to anyone here, as far as I can recall.

Keep on the doctors. Many of us spend quite a time being diagnosed. I don't believe anyone spent 5 years, though, and if it was tongue cancer, my personal opinion, not medically, is the cancer would have already spread throughout the body and you would have more issues.

I hope you find some answers sooner than later. Good luck and best wishes.

Hi there... so I am not a dr. either... however...

Swelling usually equals tissue perfusion (blood? Lymph fluid?) since it's not allergy related I would look to circulatory issues.
(supported by the fact that by late afternoon it has subsided a bit - you're up - on your feet, blood settles and drains as does lymph fluid - swelling goes down). Maybe look into diseases of the lymph system? Try some lymphatic massage (there are people who do this specifically) see if they can help they can teach you ways to do it yourself.

I have had surgery that impedes my lymph drainage in my neck - because of this my tongue is always a bit swollen... they are all related.

No guarantees of course but to follow it up to see if that might be what's going on.

take care and let us know what happens.