The Mouth that Roared

The Mouth that Roared

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.

***

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‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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9 comments

  1. Johnita says:

    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

  2. Ms is me says:

    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 says:

      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.

  3. Gale Langseth Vester says:

    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.

  4. Gale Langseth Vester says:

    …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!

  5. Kathy Easterday says:

    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.

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