So many times over the years I have mentioned the many different sensations BMS can cause. Classic BMS. Mostly it's the tongue that's affected but on certain occations,some people will feel it burn into the gums. My tongue always feels like sand paper, or the scalded sensation like it has just been burnt with hot coffee. that sensation never goes away. Then the other sensations of salty, sour, bitter. Over the years I have found a way to put it on the back burner,and try to live life but it's always there in the back groud so it's hard to forget totally. When you live with something like this for such a long time after a while you can't remember what a normal sensation feels like and that may be the reason for most of us living and dealing with it. Really it's a terrible disorder and only the sufferers would know.

John

Also, Nobody knows what really causes BMS. It is called by the medical comunity as the "Medical Mystery". I could honetly say of all the possibilties I have had many. I do know that the nerves in the tongue are badly damaged. What causes it?. I have had in the years surrounding the start of BMS, everything from Mega atibiotic therapy to root canal, injections, sinus infections, ear infections,some blood loss, acidy stomach etc..All of which have been linked to BMS but they cannot pin it down. Still I'm basically a very healthy person. believe it or not.

When I have acidy drinks like, wine, coffee, juice, etc.. I feel my tongue get REAL GRITTY. it's affected more-so by acidy foods.

I was surprised to find this..
Reading some early health journels, they mention this disorder
which was seen many years ago as a mental disorder. I belive it's
the disoder that make one mental, not the other way around, but
I do admit, if you focus all of your attention on your mouth it definately gets worse and when you're distracted from it, it gets a little better. I would guess since it's attached to the nervous
system this could happen.

Finally,try to find a Dr. that specializes in this or even knows what it is. Are they really researching to find a cure for this or are we all just kidding ourselves? At this point I would go anywhere, to try anything, that could help me.

john

You sound as miserable as I am about this condition. I've had it for almost 5 years now after some rubbish dentist did a root canal while looking out of the window and drilled too far in. My mouth burns and tingles and the teeth on the right side of my face feel like they're too big for my mouth. The offending tooth was taken out 5 years ago so I now also have a gap which constantly reminds me never to trust a dentist again. I have seen almost all the doctors in my practice and oral surgeons and a neurologist and none of them shows any sympathy. In fact the neurologist seemed to think it was all in my mind as she couldn't see the twitching I was complaining about. Sure, this thing isn't life threatening in itself (which seems to be all they care about) but at my darkest moments I have considered whether life like this is really worth living. I have tried Neurontin and Lyrica to no avail and am now on Benfotiamine and Magnesium but I'm not holding out much hope. I am tired of going back to the doctors so I'm not going any more, I can't stand the humiliation when they can't understand why I'm making such a fuss about a bit of burning/tingling. The twitching is a constant thing now and I'm praying that this means something is happening and maybe I'll get better some time but no-one seems to know if there is any hope or if I have to endure this forever. Does anyone have any info out there about this twitching? I agree that this thing can leve you feeling so alone, like you're the only one in the world with it so I'm so grateful for this website and forum. Good luck to you, John, and everyone else out there.

It's so nice to "meet" you. I am alone so far in this BMS thing. I have a "jerk" thing that happens every so often to my jaw. I think it is probably from me clenching my jaw from the burning and pain of the BMS.

I saw several doctors who stared at me funny when I complained about my mouth. Then I found this Miriam Grushka online who had done research into BMS. She is in Canada now I believe. She referred me to an orofacial pain guy in my city. I've seen him once. He seems thorough, totally believes me, but doesn't seem to have any miracle cures. He is starting with the thrush rinse, B vitamins, Klonopin, and an estrogen level. I go back to see him in two weeks. I guess he's throwing the kitchen sink at me. My BMS has gone on about a year. Started around the time of a severe bipolar episode (hospitalization) and my going on a series of many different psych drugs. I am also 49 so menopause may play a role. I also have severe GERD. I'm like a walking ad for BMS.

Thinking of everyone. I know the loneliness and desperation.

Thanks churchlady!