And now, my sons, remember, remember that it is upon the rock of our Redeemer, who is Christ, the son of God, that ye must build your foundation. Heleman 5:12
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Sunday, July 29, 2012
Pemphigus Vulgarus
Pempha what? ! For a little over a year I have been struggling with a burning mouth. At first I thought it was just allergies to certain foods, but as time went on more and more foods were burning my mouth and the constant pain started to take it's tole. Eating became a chore more than anything and it hurt to talk, and brush my teeth. I stopped being able to eat and drink so many things I began to worry about my nutrition intake. I knew my body wasn't getting the nutrients it needed. However, the worst part was I couldn't even eat a piece of chocolate without burning. This was when I realized it was time to take drastic measures and go to the doctor!!:)
I tried to self medicate for about 6 months, but mid March I decided to go see a doctor. The doctor thought it was a yeast infection and put my on medication to treat it, but after two weeks there was no change. I then went to a dentist who prescribed another yeast medication. Like the first--no results. I went to a periodontist who prescribed a third yeast medication and once again...it didn't help. I decided to go back to my primary care doctor and she took a culture to see if she could decide what type of yeast it was so we could see what medication would work. The culture came back saying it wasn't a yeast! Huh...that explained a lot! She referred me to an Ear, Nose, and Throat doctor. The first time I visited him he didn't think there was a real problem and told me I should have my permanent retainer removed and change toothpastes. Well, that wasn't very helpful either, but I must say I'm very glad to have the permanent retainer out of my mouth. About a month after following those orders my mouth continued to get worse, so I decided to go back hoping the second time he'd take me more seriously. I figured he might as the damage in my mouth was much more visible. When I went for the second time he was shocked. He gasped when he saw my mouth and said, "Oh yeah...I see."(I almost started crying when he said that, but I held back the tears). However, he didn't have the right lab equipment to test it and so he got on the phone with a dermatologist here in town who has better lab equipment and got me an appointment there. The following day I went to his office and they took a biopsy of my tongue(which wasn't the funnest thing ever, but was necessary). About a week later they called me back with the test results. Apparently I have an auto immune disorder known as Pemphigus Vulgarus (PV). In about 50% of the cases it is exclusive, or begins, in the mouth. Basically, my body has made an antibody against itself, which results in blistering. It is a chronic condition and left untreated can be fatal(more due to infection or of course malnutrition). However, they do thankfully have ways to treat it. The dermatologist had me come in for a second biopsy(wasn't any more fun the second time) and he sent that to the University of Utah for confirmation. Those tests came back the same with a 95% chance that PV is what has been causing the issues for the past year. He put me on medication before the second set of tests came back and within a short period of time(like three days) I could taste food again. Not only could I taste food, but food wasn't burning. MIRACLE!! There are some drawbacks to the medication I am on, but for now I am just thankful to feel normal again.
This experience has taught me a lot. I am definitely humbled. I've always had a very healthy body and almost thought doctors were for 'sick people', me not being one of those. Huh. Well, I am sure thankful for science and modern medicine because NOTHING I was trying was working! A lot of things can be fixed by diet and exercise, but some things can't. I admit sometimes I just focus on the negative aspects of my body but now I realize the blessing of simply being able to taste, see, smell, feel, walk, run, hear...the list goes on. I am thankful the doctors were able to diagnose the problem because from what I have read the sooner it is detected the better. I am hopeful that it can be put into remission. I am thankful for the blessings I have. I am thankful I have insurance and doctors who have the knowledge to help. I am humbled to think that each day is a blessing. When you have a doctor tell you a condition you have can be fatal if left untreated, it makes you realize what a blessing everyday is. I'm really not trying to be dramatic, just thankful for life.
3 comments:
I'm so sorry you've had to live through this pain for the past year. Getting a correct diagnosis on anything is a miracle in and of itself. I'm happy you're doing better sis. Love you!!!
-Dora
I love ya and I am SO very grateful that you know what you are dealing with now and that it is treatable! You are the BEST....and seriously I can't imagine not taking food for that long!
I love you.
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