Introducing My ‘MS Popeye-Spinach Hypothesis’
For any younger readers, and by that I’m guessing 45 and under, may I present the cartoon character Popeye the Sailor Man.
He got himself out of scrapes by downing a can of spinach, which supercharged his muscles. There was none of that nonsense of de-stalking raw young leaves and adding a drizzle of walnut oil and a pinch of sea salt before tossing it into a crunchy, yummy side salad. That would have taken far too long when he was being-a-battered!
A 2018 study published in the journal Scientific Reports noted that ”approximately three out of four MS subjects are affected by bilateral upper limb dysfunction.” Mine began the moment I had my first infusion of Lemtrada (alemtuzumab) five years ago.
Overnight, my right hand immediately started cramping up. This continued to spread until my entire arm was affected.
The inexorable demyelination of my neurons has now put my arm into a constant state of flex. Without an inordinate quantity of drugs to relax it, I would be in incessant screaming agony. I know this because I was, until all of the following drugs were prescribed.
Here goes.
Gabapentin: I’m now on the maximum dose, due to it also working on one of my other comorbidities induced by MS, trigeminal neuralgia. This is a bonus for both conditions.
Similarly harmonious is baclofen.
Finally, I also have diazepam, which is perhaps better known by its older brand name, Valium. This drug was originally prescribed to deal with the regular spasms of my arm, which reduced me into a weeping mess. Then I found that if I took the maximum dose every night, my right arm would become somewhat useable the next day.
Actually, this occurred during a recent hospital stay. I no longer had control of my drugs, and they kept offering me two capsules every night. This was real bliss, as the constant shouting of a few of the distressed and confused patients simply faded into the darkness.
At this point, diazepam no longer reduced me to a puddle the next morning. I was becoming used to it, or technically, “tolerant.” However, I’d only been prescribed the maximum dose of two 5 mg capsules in extremis (such as during a spasm).
I phoned my doctor, as it was about time to fess up.
Immediately, my behavior changed, and I started taking just one dose every second day, at most. A warning of possible dementia as a side effect was enough for me. Diazepam is also supposed to be habit-forming; if you enjoy nights of total oblivion, it’s the drug for you. I prefer having dreams in which at least I get to walk, or even run, around; never flying, though, which is a tad prosaic!
So why the Popeye reference?
I got quite morose ā OK, depressed ā last weekend when I tried to put a stocking and foot wraps on my left leg. This is for another of my MS-derived comorbidities, lymphedema. A few months ago, I could just about do this. Well, I managed this time, but only barely.
Then I realized that I was no more disabled than before. It’s just that my right arm could no longer bend as far, because its muscles were in an even greater state of flex. Because I can hardly use that arm, my gun should have shrunk. But I realized that it actually was bigger than I ever had managed in all my years of sport.
That’s my “MS Popeye-Spinach Hypothesis”: that the constant constriction of my arm is building up the muscle. There’s plenty of references on the internet to MS causing muscles to shrink, but I couldn’t find any causing the opposite effect.
I like spinach, but I really don’t down cans of it!
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Comments
John Cowburn
Hi John, I noticed that in one of your posts you mentioned having your annual steroid meds. Is this something you have asked for or has your Neuro prescribed it? And are the steroids taken orally or by injections? Reason I'm asking - I have SPMS, first symptoms diagnosed 16 years ago, don't think I everhas RRMS just a long slow decline, now in a wheelchair 95% of the time. I was prescribed steroid injections about 2 years after diagnosis and it made a huge difference for about 2 to 3 months. I've asked the Neuro about having another dose of steroids but he just poo poos it saying it isn't possible for me. I haven't pushed this but feel it would be good to have some improvements even for a short time. Would appreciate you views based on your own experience. I'm 74 by the way. John
John Connor
Hi Fellow John
I think I've had them last year & this to see if I had any RRMS left. This last round shows there's little left [though my eyesight & indeed trigeminal neuralgia did improve].
They were both in tablet form. Which makes sense as getting me to hospital is a bit like organising D-day!
From wot I've read steroids only help temporally anyway.
I don't know yet if they r of any help to SPMS. I tend to doubt it.
Ta for reading me with more attention then I write!
Cheers John
Christopher
Hi John.
I like your article itās very interesting and hey thought-provoking hypothesis. I have been dealing with primary progressive multiple sclerosis for about 19 years maybe more. In that time I have had many years of physical and occupational therapy with more than a few exceptionally smart therapists. I know it can be really exciting I had a great pick me up feel feel like Iāve hit a breakthrough epiphany. And I am not trying to burst your bubble but the truth four motor nerves and muscles is somewhat less than inspiring. There might be something else going on but without actually using effort with the muscles they wonāt grow with just increased toneāthey need your intentional effort against resistance. It would be really great if science finds a certain type of diet does wonders for MS, and maybe they may find that spinach is not just a super food for Popeye.
I sincerely hope you find what youāre looking for and keep searching thereās got to be a lot more out there.
Regards,
Christopher Torri
John Connor
Hi Christopher,
Well, it's only a hypothesis so you may have already disproved it!
However my still puny left arm now does all the heavy lifting. My right one even joins in occasionally but only when it feels like it.
Still think the near constant 24 hour straining has set up a feedback loop. The stronger the muscle gets, the more strain there is.
I'm 63 & have never had a gun like it!
Cheers John
Dori Rocco
I also have severe spasticity in my arm. If you were to see me walking you would think I had a stroke. My left arm and hand have been curled up and pretty much useless for years now. I'm very happy to report though, that my right arm and hand are stronger than ever and they get the job done. I feel very fortunate as I am right-handed.