Bite your tongue!

Over the last couple of years I have started biting my tongue on occasion (about every 6-8 weeks). These bites are not like taking a nip out of the tip of your tongue. These bites are in the middle third of the tongue and when I bite into it there is a crunching sound and some excruciating pain. Most of the time I take a hunk of flesh out of the tongue and it bleeds a little.

When I checked with my neurologist about this problem, he said my jaw and tongue muscles are atrophying. My wife tells me I need to be more aware of my chewing habits. I did notice that many of these times I am chewing on a salad.

Since beginning to take Warfarin for my blood clot, my blood has thinned to a point where anything (a scratch or cut, for example) won’t stop bleeding unless pressure is applied. Well, when I bit my tongue last Wednesday, it would not stop bleeding. Pressure didn’t seem to help. Ice seemed to help a little. Finally, pressure with a tea bag finally worked. Two hours later, however, it broke open again. More ice, pressure and tea bags.

A week later the tongue is still swollen a little, but everything else seems back to normal. And, I am listening to my wife … like I always do. (Okay, my fingers are crossed)

Being someone who is normally pretty optimistic, very little gets me down for long. I seem to have a way of turning negative events into a learning experience and find something positive about it. But, this incident has me concerned. If it was a more serious wound, or internal bleeding (from a fall, for example, causing a serious sprain or broken bone), the situation might require immediate attention.

When I discussed this problem of biting my tongue with another KD’r about my age, he mentioned he is also having this problem. Now I am wondering if more people living with Kennedy’s Disease have this problem as their atrophy progresses. Please let me know if you are also experiencing this issue.