John Connor
Forum Replies Created
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Hi Jono – more MS’ers have written to you. You’ll find their answers in the Newly Diagnosed section. Cheers John
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Hi Jono
I turned my answer above into my column for this week
I’m going to start it off as its own topic in the Newly Diagnosed section.
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I use CBD when I haven’t got the real thing! Think it has an effect but this could be just placebo. As for the real stuff drink it at night with cocoa [now always get marijuana oil] as it helps me sleep and reduces the muscle pain I often get in my right arm. Was part of the post-sixties generation that took drugs recreationaly. Its strange that MS has meant that its no longer for fun but survival!
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Hi Ed. I’m not bitter about MS either – it’s just one of those things. We’re highly complicated biological machines so it’s very easy for something to go wrong – the odds are long. We’ve unfortunately won the anti-lottery. Still the odds on being born at all are possibly one in 400 trillion!
I’ve only had MS for 10 years – my first symptom actually happened on a tennis court 12 years ago! I ruptured my shoulder when I fell running for a drop shot. I wasn’t much good at the game either! In 2012 I started wheelchair tennis at a major training venue – handily just down the hill from my house. I lasted 5 years till MS stopped me – guess I am bitter about that.
Don’t like the rain? Neither does Donald Trump! Is it a hair thing?
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Well I wasn’t bothered before I had MS! Used to rock a bumbag [US translation fanny-pack] much to my young sons chagrin. He was in for a shock when my niece who was aiming to carve out a career in the fashion industry [she now works for Chloe in Paris] came to live with us whilst studying in London. She proclaimed that bumbags & load yellow tops were now the fashion – they’d been mine for years! I still work in a showbiz environment once a week and my uniform of jeans and sharp shirts has had to give way to T-shirts and track suit bottoms. Can’t deal with buttons and anything requiring too much standing to put on. Still, have always liked combat trousers & they can both look good and be comfortable.
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Well you lot are obviously dealing with the heat better than me! I turned the above into my column this week Last night was significantly worse…. it was over 100f in he UK. We, like many other European countries, broke our hottest day in July ever records. My wife only just managed to get me into bed – we tried every bit of equipment we had then broke out the big gun – the sit to stand lift, It was sill perilously close. So I’ve started investigating mobile air-con units. I don’t have to make any hasty decisions – they’ve all sold out.
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Hi Richard. Marijuana certainly seems be effective for some with epilepsy. I’ve never been into alternative therapies but there’s enough anecdotal evidence to indicate it can help with MS. I’m about to add to those anecdotes. In real time as I’m replying here my right arm became too painful to think! So I’ve just swallowed a couple of drops of cannabis oil. The pain in my arm has already significantly lessened. Hurrah! Unfortunately I’ve then also had to spend an inordinate amount of time actually typing the thing! Cheers John
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Hi Annette – good question. I always thought that the fun part, the THC, was what gave you the munchies from marijuana. It seems this is mostly true but the CBD may reduce anxiety and that may make you more hungry. This is all new territory for me but luckily a Washington Post journalist asked exactly this question. The link is embedded here.
Cheers John
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Hi Jilleen. Ta for replying. There’s a difference between us. I definitely know I don’t look good naked – I just still think I do!!! Found a company called Big Dude Clothing from an online ad and they seem to have good gear. My 23 year old son even commented positively on a pair of trousers I was trying out. Mind you he tends to acquire items of mine he ‘likes’. It’s the only thing I’ve got in common with David Beckham!
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Thankfully this doesn’t seem as bad as it could be! It doesn’t seem to factor in the treatments we take – pretty sure taking Lemtrada for instance raises the chances of cancer. How about some good news occasionally – if you’ve got MS you’re more likely to meet a Unicorn!
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I wonder if the deterioration that has happened with my MS [despite no new lesions] may have something to do with this? Also a possible upside for those of us who’ve gone through Lemtrada – is that supposedly our brains actually now will shrink less than even the able bodied. Anyone got any insights?
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Ta for replying Jilleen. I have to generate an idea a day for the forum and you’ve just given me two! I can’t thank you enough!!!
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Well, the problem for me is the time it takes to get to the hospital and back. Also need something like 5 hours to recover anyway. 1 1/2 hours shorter is actually relatively minor. It also helps not to be abandoned by hospital transport. Yes am plugging a recent column of mine.
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Hi Jono
I’m John one  of the forum moderators (the other is Ed Tobias).
What follows is strictly my view. I wish I’d had  the sense when I was finally diagnosed to write to someone about it. This is very much what I’d wished I’d known then.
I was 51 (am now 61). Had been hit by a sclerosis a couple of years  before but it hadn’t developed into MS: unfortunately it did.
I’m British & the policy back then was to only give DMT’s (Disease Modifying Therapies) after a number of relapses (this has now changed thankfully).
Am now in a wheelchair- it seems MS is often v aggressive when it occurs later in life  I read recently (haven’t done the research) that 15% of us are destined to be in wheelchair.
I’d tell my newly diagnosed self  to grab a DMT as early as poss. Indeed I’d push for stem cell replacement (comes with 1-2% risk of death mind) . By the time I could have got it my MS had already progressed to where it would no longer work. It doesn’t fix you but it freezes you where you now are. MS is a progressive disease so grabbing what you can whilst you can is eminently preferable.
Good luck Jono -this disease is incredibly complex & new things keep popping up even when you’re something of an old lag like me.
MS is different for everybody but I’ve written a column here for 2 years (Fall Down, Get Up Again) which might give an insight of what may happen to you. It will also get me another reader! (Toot-toot)
Cheers John
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OK, well it seems I’m going to answer my own question!!!
My wife wondered as I know sit down all day – whether my back had locked because of this. I had to have a lumbar puncture last year to see if I was eligible to have Ocrevus. The sample in the end had to be taken with the help of an X-Ray. So she’s onto something – my spine has no doubt just mashed itself together.
I have an exercise regime which admittedly only gets attempted occasionally.  In it I’m supposed to stand unaided for as long as I can. My record is about a minute but even then I’m hunched!
So I tried standing using my 4 pronged stick and a chest of drawers for support. With this I could actually stand upright. And I felt exactly the same back pain as when I lie down!
I managed 4 minutes. That night my back pain eased.
I now try and do this daily. I just managed 6 minutes.
I’ll report back [back!!!! I’m wasted here…] tomorrow…
I can’t be the only one with severe mobility issues. Anyone else have this problem? Cheers John
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Thanx Nicholas. I’m now 2 DMT’s along from Gilenya – Lemtrada [awful] and now Ocrevus. Actually the symptoms I take Ibuprofen started after my very first infusion of Lemtrada!
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Hi Stef
I’ve been using CBD oil for a number of months now. Have no idea if it really works but it makes me feel better – this could be psychosomatic or just the plain ol’ placebo effect. I use Love CBD’s ‘Entourage’
from Holland. Completely legal in UK –Â don’t know anywhere in the West where CBD is illegal.
I take loads of supplements and don’t feel the need to inform my Neurologist. The only supplement that’s ever been mentioned to me medically is Vitamin D3.
When marijuana oil is added to the mix – then it’s not just in my head. Sure get a bit distanced & fuzzy but my right hand/arm both function better and pain drops away.
Best John
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Well then Elma – here I go ‘Thank You for Sharing’.
I’ve been at this two weeks and you’re my first customer! The retail biz is really hard even if you’re doing it on the net!
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Hi y’all. I’m British but trying to ingratiate myself. I’m also the new co-moderator of the forum. I’ve been a columnist here for 2 years: https://multiplesclerosisnewstoday.com/author/john-connor/. So if nothing else I’ll get things going by giving myself a plug. Yup – there’s a new water feature in this here Forum Town! John x