At first, I was told this was normal, until I had an outbreak of around ten sores, which I finally could not deal with and started pushing my doctor to find a cure or to find some kind of "cure-all" medicine to make my world less uncomfortable. I went from my pediatrician to a family doctor, to handfuls of "specialists" in oral medicine, dermatology, and Ear-Nose-Throat. I've been put through so many tests that I want to punch small animals for relief.
What's the best part? More than half of the doctors I've seen have been awe-struck and have said things along the lines of "I haven't seen anything like this before." At least the other half are smart or at least hide the fact that they are amazed that I am not crying or something ridiculous.
It wasn't until recently, maybe a year ago, that we started getting down to business. Before this, I had been put through tons of prescription drugs, urine samples, blood samples and biopsies--you name it, I probably had it done. Let's make a list of some tests that come to mind:
-Allergy tests, including a food test
-Urine tests
-Never ending blood work
-Biopsies on ulcer tissues
-Extensive "do you do illegal drugs" interviews
-Endoscopy (also with a biopsy)
-Throat/mouth cultures
-More that I can think of...
Some medications that come to mind (some may repeat because I don't know what they do):
-Tetracycline (antibiotics)
-Valtrex (herpes virus--yep, don't have it)
-Topical ointments
-Steroids
-Countless mouth rinses
-Random assorted prescription drugs (none of which were pain killers, which is what I honestly really wanted because these are excruciating)
-More that I can think of... (come on it's been a continuous 4 years...)
Not only is the pain emotionally and physically stressful, but there's nothing worse than being in pain and all tests run "normal". Oh yeah, and the fact that you are told that you may have an incurable auto-immune disorder. It was thought that I may have Pemphigus or Behcet's syndrome and for a moment (and still) I just wanted to feel normal. It turns out (so far) that I don't have an autoimmune disease...
Thank God I had health insurance through that whole mess, however now I am not so fortunate. I was doing well for the past almost year, when I ran into the fact that I can't afford to go to see the specialist I was seeing in Indianapolis. It seems like every time I go I rack up a bill of almost $200. I'm broke and my throat seems as if it is going to completely be ulcered over.
As for the cure, I was prescribed Dexamethasone Elixir .5g/5ml (I think I got that right). It's a cortisone treatment (from what I remember). I am supposed to swish it around a few times a day and spit it out, so that my bones do not absorb the crazy stuff in it.
Here are a few pics for the kids:
(Sorry, I don't feel like shaving when in intense pain) Not only do I get these on my gums, throat, and inner lip, but I get them on my tongue as well. You can see it's the same height as my tongue. This has been about 2-3 weeks since it started to ulcer.
You can see that the ulcer on the right side is the most defined, as well as the smaller one towards the middle-left. The whole left side is a large ulcer that is kind of awkwardly spread around the surrounding tissue. You can see that my whole throat looks very irritated and has many small bumps. Is this painful? Yes.
