Thanks to MS Progression, My Weight Became a Problem

Columnist John Connor narrates his ongoing difficulties with MS and weight gain

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by John Connor |

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My weight went off the scale when my multiple sclerosis (MS) meant that I could no longer safely get on the scale.

This was probably about four years ago. In them there halcyon days (for me, anyway), I still shared our second-floor bedroom (first-floor, for those of us here in the U.K.) with my forbearing wife, Jane. I say forbearing because toward the end, I only ventured out of it to empty poo, via propelling myself on my wheeled commode to the bathroom. Our bedroom was now my office, lavatory, and dining room. Hardly a salubrious partner to share a room with.

The only time I left was for medical appointments, parties, and to run my comedy show on Tuesdays.

Stumbling downstairs was relatively straightforward — I went with the flow of gravity. Getting back up them, however, was increasingly becoming like scaling the hardest indoor climbing wall at the local leisure center, especially after the fatigue of working all evening and, ahem, a few drinkypoos. (That was just bonding with my team. Hey, it’s showbiz love.)

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One Tuesday, sometime in the early new year of 2019, I knew I wasn’t going to make it up them. Anyway, a new hospital bed had just been installed in our freshly decorated front room. I wheeled into my new bedroom and pulled myself into bed. I would never make it back up those stairs again. Jane and I were now a Victorian (or occasionally, presidential) married couple with separate bedrooms.

Then, within seven months of my Ocrevus (ocrelizumab) treatment being ended in December 2019, due to a shot immune system, two mega-relapses followed. These put me into a wheelchair that had to be powered. Oh, yes, there also was a new pandemic that had flipped most of the world to science fiction mode.

COVID-19, with next to no immunity and no vaccine yet available, was for me a death sentence. Was I now paranoid of everyone? You betcha.

I gave up. I increasingly ate more, which became a neurological cycle of addiction in which the more I ate, the more I needed. A loaf of bread had to be purchased daily. The load of my morning toast was breaking the plate. There was no thought of calories when I had those crisp slices of wholemeal bread lathered with peanut butter and a soupçon of red jam. All of my many trips to North America had rubbed off on my toast.

I had no idea of my weight. I kept eating.

In March 2021, I was carted off to the hospital with cellulitis. There, they measured my weight when they had to put me in a hoist to give me an air mattress. I was shocked to learn that I was now 18 stone (252 pounds). I’d never been that heavy before! Previously, 16 stone (224 pounds) was enough to make me reduce my calorie load.

Chez-moi, I had a big basket of treats to grab at my own pleasure. This meant I didn’t disturb Jane, whose office was now the dining table in the kitchen. Her proper office (and long, long ago also mine) was up in our converted loft. This was now occupied by her brother for just over a year. Lockdown had trapped him here. And my youngest son was back for the duration, so his room was also denied to her.

On my return from the hospital, I axed the basket of treats. But it wasn’t enough — my brain craved food.

Last month, I went to the hospital again to be assessed for a clinical drug trial. They had to give me an MRI, during which a hoist was needed to transfer me. While I was in the hoist, I inquired about my weight. I was gobsmacked at the response: 20 stone (280 pounds).

In response, I’ve been radical lately, eating small, controlled breakfasts and then nothing till dinner. With no seconds! Amazingly, I’ve already lost half a stone (7 pounds).

I also found out they have wheelchair scales at my MS therapy center. They weighed my wheelchair while I was in the standing frame, and once I was back in the chair, they weighed the lot and deducted the chair’s weight.

The good news is I’ve been self-catheterizing for over a decade, and it’s just gotten a lot easier. I can now see what I’m doing, rather than spending eons trying to insert the catheter. Before, it was like trying to hit a bullseye on a dartboard with a blindfold. For my American readers, darts is like ax throwing — except you can play it down at the pub.

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, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Leanne Broughton avatar

Leanne Broughton

My weight soared around 2018 when i had a relapse. I was not very mobile, mostly with a cane. I stared Ocrevus at that time. My daughter announced her engagement and I thought I should lose some weight befire the wedding. I dieted but also started exercising daily, simple exercies but more than I had done in years. Her wedding was in 2019 and I was down to a near goal weight. Then my trigeminal neuralgia started up again. By 2020 I was still exercising, feeling good, but the TN was getting worse. I had my last dose of Ocrevus May 2020, partly because my walking worsened after each infusion. I later heard about it reducing my immunity. I have now had my vaccines and 2 boosters, awaiting the 3rd. My TN has put me through hell this past year. I am just about through it. I have had botox injections on the right side of my face every 3 months and the pain is almost gone after 6 months. Another long story. But my weight has started to increase as I've not been able to exercise while on so many pain killers that sedate me (high doses of gabapentin mostly). What was also extremely helpful was oxcarbazezepine (I am allergic to carbamazepine). I am just starting my exercises again. Like everything with MS we are always rebuilding. My neuro says the Ocrevus has long term effects on the immune system. So I am still cautious re Covid, even though the world has opened up again. Sorry for the long story, covering 3 topics.

John Connor avatar

John Connor

Yup, Had Lemtrada then Ocrevus. Ended up with a blood count 0.1 leukocytes! 3 years later it’s crawled up to 0.45. Should only take 3 months to recover a nurse told me 2 months ago.
U can't really lower weight unless u do extreme amounts of exercise. We can’t in our condition anyway. Though there are recent science papers showing that exercise has real beneficial effects for us MS mob.
Sorry. Have gone into my MS Forum Moderator mode.
U can join in the fun via the Forums [] link at the top of the page.
Cheers John

Bonny Mower avatar

Bonny Mower

Congratulations on a great start! And good luck!

(No diet tips here. I'm sure your inbox is overflowing with advice.)

All the best from a fan in California, one of the 50 states in the USA.


John Connor avatar

John Connor

I tried this 5 + years ago. Luckily for me it turned out it only works on certain types of people. Thankfully, I wasn’t one of them.

John Connor avatar

John Connor

Sorry - wrong box!
Spent some time in San Fran in the '80s. Told it's become a v. diff place due to the homeless situation.

Heather Daniels avatar

Heather Daniels

I wanted to comment on PPMS and weight gain. A few weeks ago I listened to a video from Dr. Aaron Boster and weight loss with intermittent fasting for those of us who have mobility issues. I've been doing this for over a month and have lost 5 lbs. As I have Type 2 Diabetes, I check my blood sugar levels at times and I'm doing fine with it.

John Connor avatar

John Connor

I tried this 5 + years ago. Luckily for me it turned out it only works on certain types of people. Thankfully, I wasn’t one of them.

LUCE avatar



John Connor avatar

John Connor

Cut back on your eating & save a fortune in fad diets that don't work.


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