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.
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Wow, I had this last fall, and never made the connection. But it’s gone now………
It comes and goes and, for some, gets worse over decades
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
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.
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.
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.
…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!
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.
Hi Kathy – you don’t have to suffer. Oxcarbazepine changed my life. See this column (https://multiplesclerosisnewstoday.com/2018/10/05/ms-advice-dont-turn-anything-down/) on how it was prescribed for me. Cheers John
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!