The Mouth that Roared

John Connor avatar

by John Connor |

Share this article:

Share article via email

john connor

After 10-odd ― indeed, increasingly odd ― years, I presumed I’d become something of a gnarled hand at MS. If you read about something on practically a daily basis, you begin to think you’ve got pretty comprehensive knowledge of a subject. Sure, in the past, events happened that I wasn’t prepared for and then I had to scramble to catch up, but I was sort of hoping that was over.

To anyone who has done any form of higher education, you soon realize that you don’t know what you don’t know. To get holistic knowledge of a subject requires a deep background education ― so to really understand the vagaries of MS, well, you need a solid grounding in medicine then years of specialization.

I’m sure this sounds blindingly obvious, but we do live in a time when personal arrogance trumps facts. However much I scorn this, it seems I’ve been swept along and joined the self-deluded. I haven’t lost it completely ― I’ve never, ever, looked at Russian MS sites!

In the last 12 months, I’ve experienced two instances of “electrical fire” on my tongue. Thankfully, they only lasted a few minutes. In panic, I took every pain killer I had; over recent years I’ve amassed a generous stash! I realized it was neuropathic pain, but as it didn’t hold, I’ve been hoping that the Lemtrada (alemtuzumab) treatment I’m on will hold it back. Thankfully, so far it has.

I recently saw my local MS nurse for a routine appointment and reported this going on in my mouth. She reassuringly explained that there were drugs that could help, if it became necessary. See? I had no idea.

A few months ago, I began to get a toothache in my left lower teeth. The normal symptoms: reacting to hot and cold and especially anything sweet. I had to force down ice cream! I persevered.

I couldn’t see my dentist immediately, as this all coincided with my second round of Lemtrada infusions and a month of living in solitary because of my lowered immune system. When I eventually got there, he took an X-ray and I was called back for a new filling. Only it was for a tooth on my left top side, where I had no pain. He found nothing wrong with the teeth that were causing me the problem! He idly asked if MS could be affecting my teeth? I’d never heard of such thing, but I have at least learned that MS does some weird things. It was a possibility.

I didn’t really believe him until the last few days, when my lower lip became sensitive to touch. Time to hit the ‘net and research. It only took a few minutes to discover I probably had trigeminal neuralgia. It often gets confused with dental pain. Oh, great, call the cavalry.

My other MS nurse ― you can never have too many ― at the hospital where I get my Lemtrada treatment, agreed it was trigeminal neuralgia and said he would be issuing a low dose of carbamazepine.

As I write, this is so in real time that the prescription hasn’t filtered its way through the system yet. I can only hope that it helps and my second round of Lemtrada will be putting up some kind of a fight!

My battle continues.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Linda SansSouci avatar

Linda SansSouci

Wow, I had this last fall, and never made the connection. But it's gone now.........

Jocelyn avatar


It comes and goes and, for some, gets worse over decades

Johnita avatar


I have had this for years. I would have a tooth very sensitive then the ache moved to another tooth. Took some time and many dentist appts saying all is well. A litle am I nuts.
Now I use Sensadine toothpaste and keep Oragel near

Ms is me avatar

Ms is me

I have MS and accompanying Trigeminal Neuralgia. I'll take just MS any day since I've dealt with TN for 14 years and the solutions just aren't enough. I also began with dental investigations. It is a disease that has no predictions and the solutions I have tried have been short lived. Medication is all I know of that remains effective.

John Connor avatar

John Connor

My column scheduled to be published this Friday [Aug 11] is about how I'm dealing with TN and the drug I'm taking for the pain.

Gale Langseth Vester avatar

Gale Langseth Vester

Going through links I'd saved for later reading and possible comment. Yeah, only possible, as my teeth aren't speaking to anyone. Okay, their mood is good for now, but it can change in an instant, as I'd experienced a couple of months ago.

Gale Langseth Vester avatar

Gale Langseth Vester

...and a couple of months down the line, I have the f'ing trigeminal neuralgia again, like a guest that's overstayed his welcome. Did I remember that I'd saved a link to this exact same page? No. Gah!

Kathy Easterday avatar

Kathy Easterday

I have TN from hell. Pardon the language but I literally could pull all of my teeth at times. Not one or two. But all my teeth hurt. And if I were to eat some things hot then cold or visa Vera’s it’s 10 x worse. There isn’t pain medication for this. I do however use clove oil. The taste alone makes you at least think about something besides the pain.

John Connor avatar

John Connor

Hi Kathy - you don’t have to suffer. Oxcarbazepine changed my life. See this column ( on how it was prescribed for me. Cheers John

Ryan Nagy avatar

Ryan Nagy

One of my Feldenkrais students has MS and he has reported a decrease in symptoms for doing mouth, tongue and jaw sessions. I don't really have an explanation for why that is, other than the tongue, in particular, is neurologically related to many areas of our functioning. And developmentally many of our first conscious and deliberate movements as infants involve sucking and orienting with the tongue and lips. Peace!

Lucy avatar


I think I have this problem... but I won't stop picking at my teeth because they must be hurting for some reason like there is debris that the floss just isn't getting. And now I really do need a dentist.. for a root canal, because I picked out a filling... and the reason I feel I have this problem is because even though I need a procedure, I've moved on to another tooth! Why is this happening to me?!

John Connor avatar

John Connor

TN [Trigeminal Neuralgia] can happen to anyone. It just happens to us MS lots more. Not sure anyone knows why! My own pet hypothesis is that the myelin of the Vagus Nerve in our brain's neurons starts to get stripped. Of course an hypothesis is only that - it needs proof!

You just may have both - real teeth problems & TN! Mine first manifested as an electrical storm in my tongue.

You should talk to your Neurologist or MS Nurse asap!

Good luck. X


Leave a comment

Fill in the required fields to post. Your email address will not be published.

Dancing Doodle

Did you know some of the news and columns on Multiple Sclerosis News Today are recorded and available for listening on SoundCloud? These audio news stories give our readers an alternative option for accessing information important for them.

Listen Here