This began prior to my being diagnosed with MS. I did IV steroids for MS when I was diagnosed, the burning mouth subsided. It came back strong about 2 months later, as did other symptoms resulting from MS. More steroids, burning mouth felt better.

Now, about 2 months since my last round of steroids, burning mouth is back and biting. I went to my neuro, explained how my burning mouth presents:

- barely there in the morning, much worse at night, sometimes keeping me awake
- drinking, eating, chewing gum provides relief, but only temporarily
- have been brushing with Biotene for several months. I brush, the mouth feels better, then it comes back
- ruled out thrush, vitamin deficiencies, no lesions in the mouth, no discoloration, dentists baffled, neuro suspects lesion from MS is causing this

So my neuro and I discussed a treatment plan. Beginning with 100mg of Neurontin and 10mg of Amitriptyline. Building up the Neurontin 100mg each week to 500mg daily.

I reached 500mg of Neurontin, stayed on that for 3 weeks or so, and the burning mouth is horrendous once again. So I went up to 600mg of Neurontin. It's just a raging wildfire now.

I know steroids helped this. I can't rely on the steroids for this, they'll eventually lose effectiveness (and steroids are administered for treatment of MS flares and relapses).

I discussed Klonopin (the Canadian equivalent) with my neurologist at the time. We decided to try Neurontin first before going that route.

I interested to hear from those who have failed on Neurontin and switched to Klonopin, or those who find that Klonopin helped for nerve related burning mouth, and if so, what dose you were taking at the time.

I'm working with my neuro to try and find something to treat this misery. This may be a long term problem (if we're talking lesion, suspected on the brain stem, could be a lifetime problem even).

Any help would be appreciated. Thanks!

I've limited my coffee intake. I am a coffe-holic, but I felt that perhaps the acidity or something in the coffee could be adding to this. So I cut back a bit.

Also, I stopped eating fruits like apples/bananas, now I occasionally eat a nectarine (listed as low acid) and I get my C through stuff like broccoli, green pepper.

Changing the diet in my case, has helped a LOT. Also I had been taking Vitamin C supplements (500mg daily) thinking this would benefit my MS. Well, I've long known that orange juice causes me canker sores, so I haven't drank it in a long time. I noticed when I went back to C supplements my geographic and fissured tongue (2 things I've had off and on my entire life) got really bad. Fissures that were utterly painful. So I stopped the C supplements, tongue began to 'heal' from these 2 conditions, and the burning mouth began to decrease in intensity almost immediately.

Now I'm wondering, sitting here scratching my head, what is causing the burning mouth?! I know there's a connection to Vitamin C supplements causing the mouth problems all around. I know that for some reason my bod is hating on fruits... is this truly being caused by a lesion after all?! Is it entirely possible that this may actually be controllable through diet changes and by avoiding supplements that I know flare it?

My dentist (looking back now) that was treating me for TMJ pressed upon the back gums in the right and left sides of my mouth (by the jaw, on the top). After he did this, I noted at the time that the right side 'puffed' out. He said he was doing this to relieve pressure as part of my TMJ treatment. It was last year, which is completely foggy as to a time line of events, but I did call him to tell him that the spot 'puffed' out at the gum then. Is it possible that something was 'damaged' during this? I honestly cannot remember when he did this finger work pressing on my jaw inside my mouth with a lot of force. I do know that the splints I was given for TMJ, and was wearing for several months... during this time, about 2 weeks after beginning to wear these, that's when the burning mouth began.

I am going to contact the dentist and have them send me a full record of all the treatments that were done to me during this time. Hopefully I can unravel this mystery.

I have just recently been diagnosed with Burning Mouth Syndrome, after having symptoms for about four months. It is such a complex disorder and there are so many theories and potential things that can cause it. I agree that it there probably isn't just one cause, but perhaps several factors and can be very individual to each person. I have been taking Klonopin for about 5 weeks now and have seen some slight improvement in the burning. Unfortunately, I also have a constant bitter/salty taste that is affecting the taste of food and has made eating very difficult. Taste alterations are very common with BMS, and sometimes Klonopin can help with the taste as well as the burning, but so far, not in my case. I'm sorry to hear that you have BMS in conjunction with MS, that must be very challenging to say the least. I wanted to let you know that there is forum just for BMS that has been around for awhile where you can find a lot of information and caring, knowledegable people who are very willing to provide help and support. It's www.go4hope.org. I found it a few months ago when I started researching my symptoms. Thought you may want to check it out. Take care and be well. Grace