Tricks of the Trade

Tricks of the Trade

john connor

I saw my neurologist a few weeks ago for what was effectively an emergency meeting. I’d had the customary two rounds of Lemtrada (alemtuzumab) and still had a relapse. We discussed weighty subjects and there seemed, surprisingly, to still be some hope. It depends on the outcome of an MRI; I will have that clanking-heavy-metal procedure on the day of this article’s publication. Whichever way it goes, that’s a column for the future.

What interested me was the doctor’s flickering, dismissive reaction to (admittedly) a completely by-accident practice of mine. I take ibuprofen regularly, not for pain but because it makes my right arm work better. In truth, it also often ached at night — not anymore!

My right side has slowly been disintegrating over the years, to such an extent that my right leg has to be heaved around by others or myself. Not easy when the excess baggage of pitting edema has turned it into the equivalent of a baby elephant’s limb. The disintegration had been an imperceptible creep, but my right hand’s loss of ability was instantaneous. The only problem I’d had was occasionally throwing my racket instead of gracefully (I wish!) hitting the ball while playing wheelchair tennis. After my very first infusion of Lemtrada, my right hand no longer worked properly. I’m sure this would have happened eventually — the drug just exacerbated it.

My handwriting, which has always been terrible, descended into such a state that even I couldn’t read it. In this modern technological world, this shouldn’t matter, but unfortunately, my professional life requires that I write notes in darkened conditions. Years of theater criticism had made me something of an expert at this, but MS has reduced me to preschool scribbling.

A while back, I tried a marijuana experiment. Despite being heavily “baked,” I could walk better, though I now can’t remember why I was walking somewhere! The thing that really stuck with me was that my right hand miraculously worked well again and suddenly my right arm got pretty much its full range of movement back. Any pain in the arm also completely disappeared for weeks.

Besides being illegal in the U.K., getting stoned is in itself too much of a fuss. I’d found a neat way of making naughty milkshakes, but it was too much like hard work — I also lost too much time to the drug. Spending an entire evening in induced nirvana is intolerably boring. I can’t stand “mindfulness” either, even though there is now plenty of supporting evidence that it is good for MS patients.

At some point, I discovered that ibuprofen did the trick. I could write better, my range of movement improved, and any nagging muscular pain in my right arm disappeared. And I didn’t lose an evening to it! Now, I fully accept that this could just be psychosomatic, but I don’t care, as it works for me. Ibuprofen has a role in pain relief, but I can’t find any citable research about it surmounting MS physical problems.

My other recent trick is dealing with trigeminal neuralgia. If you don’t have that, be very thankful. It’s a severe pain that attacks the mouth, and it’s so tricky to treat that even heroin wouldn’t alleviate it. What does, is a medication called carbamazepine. However, that treatment’s downside is that it severely reduces any mobility that I have left.

My trick is that when I get into bed, I take two: Mobility issues are no longer a problem, and when I get up, I have many more pain-free hours during the day.

I’m not recommending any of this; it’s just the ways I’ve found to make life a little easier. With athletes these days, it’s all about improving performance by increments. These are mine.

On your marks …

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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.

9 comments

  1. Theresa says:

    Thank you John for writing about ibuprofen and marijuana. I have found when the nerve pain sets in my arm I take two Advils and function way better. So possibly what you are writing has help for everyone. I am thinking to take CBD oil for the nerves and sleep. I’ve heard many a positive thing via varietes of illness. Being diagnosed in Summer 2016, the neurologist decided not to put me on any medication as to how I have handled it over the years not knowing. I thought I had the grip (flu) winter, spring, summer and fall. Oddly, for so many years I did take aspirin and Tylenol, who knows maybe that helped me.

    Anyway, the best with the MRI and clank clank … be thinking of you and thanks for the ibuprofen tip.

    • Marcy says:

      Hemp CBD with melatonin works very well. It is available online and is legal in all 50 states. http://www.infuzions.com. Helps with sleep, helps with pain. Just watch out for the edibles, they are high in calories. I gained 10 lbs until I figured out what is was from. Now I buy the sugar-free gummies and have had no problems

      • Theresa says:

        Hi Marcy, too funny on gaining the 10 lbs. Thank you for the website as I can surely use CBD oil for the sleep and pain.

      • Leslie says:

        I have had MS over 12 years. Last year I ha. An exacberation leavi g me with pain in my right shoulder that keeps me from sleeping. I use Dragon Balm. It contains cannabis. It helps with the radiating pain. It costs $20.00 in Washington state. The 2 oz jar has lasted over 2 months. Its worth a try if you have access to it.

  2. Taz says:

    John,
    thank you for the piece as i thought it was only me. I’m referring to your right arm pain after Lemtrada, and your neurologist’s dismissive reaction and belief there is still hope.
    I’m looking forward to hearing the results of your MRI.

    I took my second Lemtrada infusion Summer 2016, and started deteriorating shortly thereafter. I can no longer use my left hand for anything including typing, which is a skill i need at work. For the past month I wake myself screaming (every night) in pain from my left side, primarily my shoulder. I’m miserable.
    I visited my neurologist a week ago and he offered cannabis but i cannot take it due to my clearance; in any case, i can’t afford to lose time as i went back to school last year.

    How did you know it was an exacerbation? what were the symptoms? were they different than pre-Lemtrada symptoms?

    Hang in there, Taz

    • John Connor says:

      Well I had no problem [that I’d noticed] in my right hand but immediately after my first infusion it felt like it does now – more like a claw!

  3. Kara says:

    Early on in my early stages of the disease, I took ibuprofen when I felt any numbness or my foot seemed to drag more. It seemed to help. At that time I figured I was reducing any possible inflammation. Who knows? Stay well and I hope you see some benefits from Lemtrada soon.

  4. itasara says:

    Just a comment after reading the posts here… I wonder if taking ibprofin or Advil on a regular basis (like every night) is safe when it comes to possibility of abdominal or stomach ulcers. On the other hand the idea that it might be helpful in inflammation is interesting since there is theory that inflammation plays a role in Multiple Sclerosis.

    I don’t know how common ulcers are with these analgesics but it can be a concern and is a side effect.

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