I have server pain in my left ear cartilage. This has been going on for 6+ years. Nothing ever shows on MRI or CatScan. I have been to several ENT Specialist. One said the thought I might at some point had Shingles. One said Minears Disease. One said He had no clue because he could not see anything.
The pain starts in the center of my ear where the opening is. It feels like it is swelling, then it gets a hot sensation, then if feels like the pressure from the pain is going to burst my ear.Then it will progress to moving up and around the backside of my ear following down the back of my ear to my jaw line.
The pain is overwhelming and is getting worse. A Flare up can last anywhere from a half hour to 3-4 days before I can get any relief. I can not touch or allow anything even my hair to touch my ear when this happening.
I just saw your post. I too have had pain my ear cartilage for years and have several posts on these boards about it. Nobody seems to know what it is (except that I'm crazy). I am just pretty sure mine is a degeneration of the cartilage. Someone posted here that it could be vitamin-D deficiency, and someone also posted it could be vitamin B6 deficiency. I've been checked for vitamin D and B6, and I am low on both and am taking a prescription-strength vitamin D and an over-the-counter B6 supplement, and I have not had a BAD flare since starting that regimen in Sept. 2009. It still hurts pretty much daily, but, as I said, not near as bad as it used to. I have spent a small fortune trying to figure out what this is and get some help, but, to be short, nobody knows. I was considering MRI or CT scan, but in reading your post, I see that too would probably be a waste of money.
I hope you will post any new information you might get.
Viki, I have the same pain, I have been to medical, ear, nose & throat, neuroligist, dentist and every other doctor I can think of and still have no answer as to what is causing the pain. I have also been to heart doctor and had every xray and mri they have recommended and the doctors still can't give me an answer.
Yes, when this first started for me relapsing polychondritis is what I asked my doctor about, and I was sent to a rheumatologist, but there are no specific tests for this disease, and it seems as if you don't look like the pictures in their medical books they say you don't have it. I guess it has to get severe enough that our noses and ears and tracheas cave in and then they will diagnose us with polychondritis. It's a fancy name for degeneration of the cartilage from what I can gather. They say, "oh, that's so rare" Well, it seems as if it isn't as rare as they think; it's just rare that it is diagnosed.
Well, you're right that it's a clinical diagnosis (i.e. not necessarily any comfirmatory tests), but it isn't just a fancy name given to degeneration of cartilage. There is a clinicopathologic profile seen with RP, and aside from problems with highly cartilagenous areas like you mentioned above, one can get a myocarditis (inflammation of the heart) as well. If the rheumatologist ruled out the diagnosis, it wasn't because "it didn't look like what it did in the book" it's because you didn't fit the clinical profile. The trick with rheumatology, however, is that many diseases in that realm can take months to present, so while it may not be RP now, more signs may show up later IF the disease develops. It is true though that just pain isn't sufficient to diagnose inflammation.
Harka, thank you for your suggestion of relapsing polychondritis, it could be a possible clue, but my ears do not turn red or get sunburned. It is more like a giant cramp in the outer ear. You can't stand to touch or bend the ear or have any part touched. You also cannot lie down on it and sometimes it is very painful to the outer ear when you lift your head and arm up when reaching into an upper cabinet to get an item.