John Connor
Forum Replies Created
-
John Connor
AdministratorMarch 11, 2020 at 12:09 pm in reply to: MD1003 high-dose Biotin pill fails Phase III trialWell that’s one supplement that I can cut down on…..
-
John Connor
AdministratorMarch 10, 2020 at 11:38 am in reply to: Clean your screen. Apple now says it’s ok.I’ve always washed my apples – even organic ones!
-
John Connor
AdministratorMarch 3, 2020 at 4:54 pm in reply to: Corona Virus and Ocrevus and Other DMTsHi Tom
Absolutely agree.
I’ve had Lemtrada and now on Ocrevus!
Indeed my immune system so compromised that my neurologist cancelled my Ocrevus infusion at the last min in Dec as the risks of PML too high!
My column this week will be all about what we/I face.
Thanks to you and Ed now won’t have to do much [or any] research.
Any jokes tho will be original!
-
John Connor
AdministratorMarch 3, 2020 at 4:37 pm in reply to: #ACTRIMS2020 – Vitamin D at High Dose Can Worsen MS, Early Study SaysWell done for doing so Ed,
I’ve been taking 15,000iu for years.
Some of the doctors I remember researching years ago were doing circa 45,oooiu!
I’ll go back to my old dose .
Ta
-
John Connor
AdministratorFebruary 25, 2020 at 8:27 pm in reply to: Finding My Way Through Sickness and Sadness with SPMSNo.
Have a flu injection every year.
But this year is obviously very different. My autoimmune system is shot because of all the Disease Modifying Therapies I’ve had. Coronavirus for me is indubitably a death sentence!
I direct/produce a live topical comedy show once a week in the heart of London’s West End. Indeed I’m writing this after a show!
In the UK things seems to be under control but I probably should withdraw from the world.
102 years ago my grandmother died of what became known as the ‘Spanish Flu’. A bird virus that killed far more than the First World War had.
My very own warning from history!
-
John Connor
AdministratorFebruary 24, 2020 at 11:38 am in reply to: MS Patients Needing Feeding Tubes May Live Longer if Given By Age 50, Study FindsGood news.
My best mate doesn’t have MS but was struck down by a massive sclerosis nearly two decades ago. He just survived and has been on a feeding tube, or as he puts it a ‘Peg’ , ever since.
He and his family decided to normalize things so he chews food and spits it out into his empty feeding bottles when everyone else is having a social meal. It’s a bit like having a meal with David Blaine – you have no idea how he does it.
Luckily he’s not up a pole, in a block of ice or underwater!
That would be weird.
-
John Connor
AdministratorFebruary 24, 2020 at 11:21 am in reply to: Need to Know: Does Multiple Sclerosis Make Me Rare?Used to think MS was a rare disease but recently I’m not sure.
Updated figs in the UK put our numbers at 130,000. According to the UK MS Society ‘nearly 7,000 people are diagnosed each year. This means that around one in every 500 people in the UK has MS, and that each week, 130 people are diagnosed’.
So if we’re not rare we could at least be a really big gang! Admittedly not one on motorbikes……
-
John Connor
AdministratorFebruary 14, 2020 at 2:25 pm in reply to: CBD and Multiple Sclerosis: What You Need to KnowHi LuAnn
I’ve come to the conclusion that CBD is mostly hype.
Indeed have started a one person campaign on here to emphasis this.
THC [the fun part of marijuana] does lesson pain. It also eases symptoms – certainly with me.
There is no scientific evidence for CBD [as far as I’m aware]. It is also ferociously expensive.
Cheers John
-
There are so many symptoms attached to MS it might well be one. Not heard of it but that means zilch.
Always been a night owl and have found myself going to bed increasingly late. With a chronic illness having a touch of anxiety no doubt fuels this.
Personally liquid cannabis in cocoa not only helps sleep it also dulls MS pain.
-
John Connor
AdministratorFebruary 6, 2020 at 7:19 pm in reply to: Scottish Medicines Consortium Approves Ocrevus for Treating PPMSThere’s been a significant move to devolution in the UK. Scottish university places are free to Scottish residents for instance. So if you live in Scotland and have PPMS you can get Ocrevus prescribed. This is not true for the rest of the UK as yet.
Have written several cols about my treatment with Ocrevus – links embedded.
-
John Connor
AdministratorFebruary 6, 2020 at 2:04 pm in reply to: Can you afford your MS medications?Yup.
At least until UK Brexit lands the NHS in the unscrupulous hands of capitalist medicine!!!
-
John Connor
AdministratorJanuary 29, 2020 at 12:48 pm in reply to: BioMed X, Merck Researching Autoimmune Diseases, Including MS -
John Connor
AdministratorJanuary 24, 2020 at 3:56 pm in reply to: BrainStorm Cell Therapeutics Wins 2020 ‘Buzz of BIO’ AwardWowser!
Not heard of this but anything that even has a sniff of a chance of encouraging myelin growth has to be applauded.
-
John Connor
AdministratorJanuary 22, 2020 at 2:40 pm in reply to: MS Patients Largely Favor Blood Stem Cell Transplants But Lack Understanding, Survey FindsMy own Neurologist was shocked that I wasn’t worried about the chance of death [currently 0.3%]. But then as a patient had recently died of exactly this at the time of my consultation things were quite raw for him.
It’s no panacea if you qualify – 64% seem to benefit! It’s not the miracle cure the media love to hype.
I was too old when I was diagnosed with MS anyway and by the time my own country [UK] got round to it my MS had progressed too far. I had a good old MRI but that only confirmed it.
Still, my Neurologist’s stress levels were no doubt reduced!
-
John Connor
AdministratorJanuary 16, 2020 at 7:25 pm in reply to: As MS research evolves, a new focus on brain preservation comes to lightThere’s a lot to unpick here.
Have read a lot of contrary evidence. So much in fact that have had to leap to what is hopefully solid net sources to try and piece it together.
First ‘Brain Training’ games etc is looking more like a way of flogging Apps that is meaningless. If you get fun out of them fair enough but that is probably it!
Then there is this – ‘Bilingual brains are more resilient to dementia cause by Alzheimer’s disease’. Because of connectivity in the brain there is more protection. Pretty sure that if you’re trilingual [or more] it is even better!
Now I have this to add to the mix. I can’t speak any language but rudimentary German. Mind you if I try and ask for a beer in a French bar – if not careful the German comes out. Too many beers and I have to hope they are at least good European Union citizens. My mother was Austrian but stopped teaching me German before I went to school so I wouldn’t be bullied. It was the early ’60s – the war was still fresh.
So here’s a joke I wrote about football many years ago that fits. As I work in satire it’s far too old to ever get an outing again. But hey it fits the zeitgeist – it’s being recycled!
Roy Hodgson was the manager of England and as he had previously worked all over Europe he spoke five languages. Scouser [Liverpool] Wayne Rooney was his star player. Unfortunately for Hodgson though he spoke five languages none of them was Rooney!
-
Hi Marceletrido
I’m this sites other moderator.
What a great name – am presuming it’s your christian name. Had to really concentrate to spell it right! Hope I did!
A while back wrote a column ‘An Open Letter to a Newly Diagnosed Patient’Â based on correspondence in the Newly Diagnosed forum. There might be something in all of this relevant to you.
Great that you’re posting already.
Best John
-
John Connor
AdministratorJanuary 10, 2020 at 9:06 pm in reply to: Vegetable-rich Diet, Other Interventions Linked to Lower Fatigue in MS, Study Finds -
John Connor
AdministratorDecember 20, 2019 at 4:47 pm in reply to: Signaling Protein of Intestines May Trigger MS via Nervous System Inflammation, Study SaysThis adds to a growing sense that something is going on….
-
John Connor
AdministratorDecember 17, 2019 at 10:06 am in reply to: Cannabis Treatment for MS, Similar Diseases Goal of Atlas and University PartnershipWell, as soon as they get results they should publish. Don’t Bogart that research!
-
John Connor
AdministratorDecember 17, 2019 at 10:06 am in reply to: Cannabis Treatment for MS, Similar Diseases Goal of Atlas and University PartnershipAs soon as they get results they should publish. Don’t Bogart that research!
-
John Connor
AdministratorDecember 17, 2019 at 9:51 am in reply to: Artificial Intelligence and Machine Learning May Help in Understanding MS Cause, Groups SayWell, as a mate of The Terminator, not sure can always trust the bright future of AI but in this case looks hopeful.
John Connor
-
John Connor
AdministratorDecember 16, 2019 at 9:20 am in reply to: Are you over 55 and deciding if Ocrevus is right for you?Hi All
I’m 62 and started on Ocrevus exactly a year ago.
As a patient columnist I of course wrote about it: Steering My Own Boat and Making a Splash,The Right Hand of Lightness and my latest col  Stop in the Name of Leukocytes
It’s been the most effective Disease Modifying Therapy I’ve had. However seems like even Ocrevus isn’t about to stop my active steamroller of MS .
At the moment in limbo – which is a tuf place for us atheists to accept!
Cheers John
-
Tried this years ago. Made a difference to my weight but nothing else. Also incredibly tuf! Also found out only works well for certain types of people. Incredibly relieved when it turned out I didn’t fit the profile!
-
John Connor
AdministratorDecember 3, 2019 at 9:48 am in reply to: Newly Diagnosed MS Patients Show Changes in Gut Microbiome, Study SaysInteresting.
When research on the Microbiome began to get traction a few years ago I casually wondered if there might be an MS link? So much so that I began to use drinks to up the healthy bacteria – Kefir eventually became my breakfast drink of choice!
It’s going to be v. difficult to research us diagnosed MS’rs who quickly become laced with powerful drugs.
As with a lot of things with this disease intuition maybe the only thing we can use.
So will keep downing the ‘good’ bacteria.