no one told me??

handinhand · 07-16-2009, 02:17 PM

Hi, I have been wondering if anyone else has problems with biting the inside of your mouth??? I had not read any threads about this and my Dr. sure didn't mention it????? I think they don't tell us things because maybe we won't get it ,so don't worry about it??? I really would like to know what is going to happen to me before it does???? I am having a night guard made hoping this will help? I am not liking this whole thing at all!!!!! Take care and I am still living each day looking for the best in each..smile.. Linda

Al · 07-16-2009, 02:26 PM

There are quite a few things the docs don't tell you. Usually because they don't know or as you say, who knows if you'll get it. I have
seen quite a few people mention it. If you search cheek biting you might find it in some posts.

AL.

handinhand · 07-16-2009, 02:33 PM

Thanks Al, I always enjoy your comments.. Lin

hopingforcure · 07-16-2009, 02:40 PM

sure have that one, like Al said this thing just has a mind of it's own. A mouth guard is a fine idea. The disease that keep's giving..lol

BethU · 07-16-2009, 02:42 PM

Hi, Linda ... I've experienced biting my cheeks and tongue, and especially lately the inside of my lip when using the Bipap. There are a zillion annoying things that go on with ALS. Some things last a few months then go away, others linger on.

I doubt if most neuros are even aware of some of the smaller issues we deal with. Handling the big stuff seems to be enough for most of them. Having a night guard made is a smart idea ... I think we should all get Nobel Prizes for figuring out ways around ALS symptoms. Like, I figured out another way to put a paper clip on papers, and have learned how else to turn a key (there's a reason God gave us knuckles!).

handinhand · 07-16-2009, 02:49 PM

Hi, I think that is a wonderful idea. Lets put all our good ideas together in a book and then sale them and buy every one who needs it a night guard???? L

GlenBrittle · 07-16-2009, 05:30 PM

{{ raises his hand }}

I do , I do.
I think its weird. Mostly when I wake up and I have no warning or control over it.

"Ahhh, I love the fresh taste of blood in the morning !"

pamnandy · 07-16-2009, 06:01 PM

We use a bipap and Andy has experienced the same. We have found use of a chin strap in combination with a sports mouth guard to be his solution.

handinhand · 07-16-2009, 08:48 PM

Thanks thanks thanks, It is so hard to try and tell my friends and family all the crazy things that just keep coming..... So nice to talk to people that understand and don't look at you like wow!!!!! How awful,and you know they really don't want to hear all the depressing stuff that is going on... Don't blame them either....I try and not talk about it because I want to be as normal as I can for as long as I can!!!!! I just wish that something would come along right now... I could live with how I am at this very moment,but who knows about tomorrow????? Could all change..... I wonder how many out there have thought the same thing?????? Hugs, to you all, Linda

lisaann1170 · 07-19-2009, 01:16 AM

I'm interested to read your post, Linda. Biting his cheek and lip has been one of my dad's greatest annoyances since his diagnosis. This happens primarily while eating which makes meal times far less pleasant. I'll mention the night guard to him as a suggestion.

Thanks!!

Lorie · 07-19-2009, 01:57 AM

Tim has problems mainly while eating. He thinks he needs teeth pulled. But I know that, is not it. He is having more Cramps in his throat and Fasic's in his tongue. Just part of the process. I hate it!!!!!!!

Lorie

rose · 07-19-2009, 09:05 AM

That was one of the first things I noticed. Way back before considering any form of MND had entered my radar. I thought it was because I'd broken off part of a back molar and my cheek was going in the hole. Next, it was blood blisters on my lower lip from biting it all of the time. Now, sometimes the underside of my tongue ~ not the tongue but whatever the tissue under it is considered (?) Gets between my teeth.

I agree with everyone else, not only do the doctors not advise us about the quirky stuff that will come up, but so much of it is just so weird, it takes from us things we most likely never gave consideration to before.

handinhand · 07-20-2009, 05:31 PM

Hi, this started about a week ago now. Along with a harder time eating and talking....I will let you know about the night guard. I am having one made . It wasn't the easiest thing to have done. All that plaster in my mouth and needing to wait for it to harden up..#$#%^^&* Was hard to do..LOL I hope it helps as the bitting is getting worse each few days.. I think we must have lots of blessings coming our way someday????? Hugs, Linda

pamnandy · 07-20-2009, 07:23 PM

Another thought, consider consulting a speech therapist. They are specialists in chewing and swallowing. Ours visited the house and told us ahead of time that she would like to see Andy eat and drink. She then asked us a series of questions and finally helped with not only tips on how to better swallow (for Andy it was a chin tuck) but also swallow friendly foods. It was a great help to us.

t34gib · 07-20-2009, 08:25 PM

I have a big problem with the biting both the cheeks, tongue and lip. My dentist made the night guard and it really helps at night when I am not aware enough to be careful. Also helps with grinding teeth which has awaken me quite suddenly at times. Hope it helps you.
NancyS