Progress
My office had our holiday potluck lunch a couple of days ago, and I was pleasantly surprised that I was able to eat a tamale, as well as salad with a mild vinaigrette. Everything seemed a little spicy and tangy, but it didn't hurt. My mouth seems to be getting a little better.
posted by Angela Winston | 8:36 PM
3 Comments:
Hello Angela, I'm so glad that Google found you for me, again. I had saved your blog, wanting to answer, but it disappeared from my file.
I have had Burning Mouth Syndrome for a year and a half. Please don't get excited and think I have answers for you... I don't. I just want to encourage you to keep fighting, looking for ways to make it better for you, but to realize that it's probably going to be a part of you for a long time.
Mine also started like yours... after surgery. I had an ankle fused and four months later had both knees replaced. It was too much of a jolt for my 58 year old body. After the knee replacements, a weird neuropathy set in, starting in my feet and working its way up. I'm going numb. Even my fingertips and hands don't feel anything if scratched. I went to the Mayo Clinic in Rochester, MN, from the Bay Area in CA, last March. They diagnosed the idiopathic neuropathy, which is probably the culprit for the BMS, which all began of the stress of surgery that my body went through.
How do I handle the pain and discomfort? First, I tried Neurontin and the side affects were too much (lower leg swelling and brain fog.) I've now been on Lyrica for almost a year, gotten used to the side affects, constantly have cold water with me, and have recently gone back to teaching, by subbing in elementary. I keep a supply of little bottles of water in the freezer, with an inch or two of frozen water in them. Before I leave for school, or even to do errands in town or go to church... where ever I go, I take some of these frozen water bottles, fill them up with water, and then I have some relief to take with me. At first, the BMS really threw me. I did just as you, searched and tried everything, finding out what helped and what didn't.
Now I just live with it; get home by late afternoon and not go anyplace in the evenings, take my Lyrica 2 times a day and sip cold water all day.
I wish I could tell you more ideas, like A CURE or something.
Doctors that I've seen in the San Jose area know nothing about BMS. I've read that it's supposed to be so common, especially in us older females, but it's unheard of.
I don't know much about blogs and using the internet, but I'm going to go ahead and put in my email address, in case you or any fellow sufferers want to chat. I wish you the best with your struggle and hope that you (and I) are some of the rare ones that don't have to live with this for years.
Merry Christmas! Kate Nelson
knelsoninlincoln@msn.com
Kate, I'm glad to hear from you. I had heard that BMS could start after oral surgery but I didn't know other kinds of surgery could trigger it.
I, too, wonder why no one in Austin has ever heard of it, especially my doctor who has a lot of older patients. If it's correct that over 1 million people have it in the U.S., that's one in every 300.
Did the Mayo Clinic just diagnose your BMS? They didn't offer any solutions, or what they suggested didn't help? I had thought about going there, but my symptoms seem a little better. I am going to post a progress report which you will see under Jan. 1, 2007, so you can read more about it in that entry.
Best of luck,
Angela
Hello Angela. My Google Alert for finding information, articles, or blogs
about BMS alerted me to a fellow sufferer, in Israel! Here's her address...
http://candidacandor.blogspot.com/index.html You two have a lot of things in common, in what's happened and what you've tried! Good Luck. Kate Nelson
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