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John Connor started the topic Which MS Symptom Annoys You the Most? in the forum Living With MS 4 days, 19 hours ago
Fatigue used to be what I hated the most about my MS. Wheelchair tennis sessions started out well – by the end, oh dear.
Now that I’m in a powered wheelchair, the list of problems has grown exponentially. Not sure of my current myriad ones which I’d choose. Force me to pick one by starting a conversation about yours.
As MS affects all of us diffe…[Read more] -
John Connor started the topic Does Anyone Use Medical Marijuana for Spasticity? in the forum Alternative Treatments 1 week, 2 days ago
Using medical marijuana helps me significantly when it comes to managing my spasticity. However, for various reasons, I can’t get any right now. As such, I’m relying on diazepam at a level that isn’t healthy.
Do you use medical marijuana for managing spasticity?
Cheers John -
John Connor started the topic Do you Get Mental Fatigue? in the forum Living With MS 1 month ago
If you get Mental Fatigue, have you tried to do anything about it? In my case, it was like working through a rasping smog.
My neurologist eventually solved mine with modafinil.
As with any drug they have different effects on all of us. Tell me your experiences, please. -
John Connor replied to the topic Falling Out Of Bed. Is this an MS thing? in the forum Living With MS 1 month ago
Hi Jilly,
This is a new one – the wonders of MS r unceasing!
Luckily can no longer do anything but lie on my back! Which up to now have always found a tad unlucky.
Have read that all wheelchair using people still walk in their dreams, even the ones who’ve been that way since birth.
Besides your Neuro as Ed suggests, maybe an Occupational…[Read more]
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John Connor started the topic Beer Consumption May Be Linked to MS Risk in the forum Treatments and Trials 1 month, 1 week ago
Calm, calm, calm.
Beer drinking maybe a risk in causing MS but there doesn’t seem to be any statistical risk in making it worse once you have it. Phew.
The overall data in the report illustrates recent studies have been very mixed.
Which is a relief as the occasional (OK mostly daily can of beer) is one of my few pleasures. Especially as I s…[Read more]
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John Connor started the topic MS Tied to 75% Increased Risk of Mortality in US Study in the forum Treatments and Trials 1 month, 2 weeks ago
Though MS is not itself a terminal disease, our chances of dying earlier than otherwise are likely to be some 75% higher.
Not a great start to a topic but there is at least some upside. If you have a private pension in the UK and make it to retirement age, with a disease like MS you can opt for an enhanced annuity. This gives u a fixed annual…[Read more] -
John Connor replied to the topic Medical Marijuana – Yes or No? in the forum Alternative Treatments 1 month, 2 weeks ago
No go at all by any of my Dr’s in the UK even though it became quasi-legal a couple of years ago. None of their various hospitals allow it. Even Sativex which is totally legal – though in this case none will fund it.
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John Connor posted an update 2 months ago
Hi Tom,
Noticed u just visited the Forum and have been a member for 4 years.
I’ve been a Co-Moderator here for 3 so thought I’d say hullo.
Am still trying to work out what members would like me to write about?.
Did u find wot u were looking for etc.
Cheers John
PS SOZ, feel like I’ve turned into an Amazon feedback algorithm.-
Hi John,
I enjoy reading your segments, I gain knowledge! I would like to see if you want to write something about our group called SWiMS. Its short for The Society with MS. Its a patient led community of about 3000 people with MS that are interested in researching the latest upcoming treatments and trials. I will give you the links so you…-
Hi Tom
Did reply to u soon after your message but seems my tech ability uis it’s usual self. [I’m 64 u know].
Can’t find anything about your SWiMS gp online – u’ll be plsd to know it’s also the name of a leisure shoe company.
Researching latest T&T is right up my strasse.
Think I also clicked the friend button in case that helps.
Cheers John-
Hey there John, like you i’m a bit technologically challenged. Lets try this and see if it works.
societywithms.org
Let me know if you have access, and if you have any questions.
Thanks for your time!
Tom -
It wouldn’t let me post a link to the website but this should work.
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John Connor started the topic First Person With MS Joins New Myelin Repair Trial in the forum Treatments and Trials 2 months ago
Now this is exciting. It’s not on a mouse but Annabelle.
The MS UK Society is reporting this trial is about to start.
By repurposing existing diabetes and hay fever drugs.
The trial is testing two drugs in combination:
Metformin is an existing diabetes treatment.
Clemastine is an antihistamine used to treat hayfever.
I tried Clemastine myself f…[Read more] -
John Connor posted an update 2 months, 2 weeks ago
@jilleen Hi Jilly,
How’s it going? Have u transitioned to a powered wheelchair yet? Or is that
step – ahem – too early yet?
Let me know how you’re doing.
Cheers John
PS New series of ‘The Orville’ about to drop. Now Disney involved – budget has made it look brill. -
John Connor started the topic Why Using a Urinary Catheter Can Cause Constipation and What to Do About It in the forum Living With MS 2 months, 2 weeks ago
According to the British MS Society, bladder dysfunction occurs in at least 80 percent of people with MS.
As I am most definitely part of the 80%, I was intrigued when this article popped up in my inbox recently ‘Why Using a Urinary Catheter Can Cause Constipation and What to Do About It’ I’ve been self-catheterising – OK, OK, using intermi…[Read more] -
John Connor posted an update 2 months, 3 weeks ago
@mody Hi Mody,
See u just paid the Forum a visit. U were really active 3 years ago – I presume when u just joined us.
As a Co-Moderator who joined about then – may I ask what u’d like to see flagged up to discuss etc? How r u doing?
Cheers John -
John Connor started the topic Low Levels of APP Molecule Found in Patients With MS-related Fatigue in the forum Treatments and Trials 2 months, 3 weeks ago
With the summer upon us in the Northern hemisphere – we’ve already got an unseasonal heat wave here in the UK this week – this finding of ‘Low Levels of APP Molecule Found in Patients With MS-related Fatigue’ is, to my limited medical knowledge, the first time there may be a scientific explanation for this anchor to the majority of our lives…[Read more]
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John Connor posted an update 2 months, 3 weeks ago
@katherine
Hi Katherine
How u doing?
As you’re a ‘newbie’ to MS know how overwhelming dealing with the mental side can be. Let alone the physical.
Any questions I could help u with?
Just another MS’er, but further along the journey.
Cheers John -
John Connor started the topic The Problem of Medical Cannabis in the UK in the forum Treatments and Trials 3 months ago
In the UK even getting medicinal cannabis prescribed is a struggle. I wrote about this in one of my columns back in 2019. It was kicked off by a battling mother of a child with severe epilepsy. The only thing that worked was liquid marijuana which she bought legally in Holland and was eventually caught smuggling through customs. She had no choice…[Read more]
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John Connor started the topic Nature Podcast: The quest to prevent MS in the forum Treatments and Trials 3 months ago
Up until now, we here at Multiple Sclerosis News Today have published 83 articles about, or at least mentioning, the Epstein-Barr virus (EBV) in connection to a possible cause of MS.
Many of us find it difficult to take in complex written information. To be honest, even though this is part of my job as a moderator of this forum, I also feel…[Read more] -
John Connor replied to the topic The MSer Who Lay in Bed for 2 Years and Can Now Walk Again in the forum Living With MS 3 months, 1 week ago
Thank u v. much Sammy. Had done a lot of noodling about on the net & only fished up Coke bottles.
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John Connor started the topic The MSer Who Lay in Bed for 2 Years and Can Now Walk Again in the forum Living With MS 3 months, 1 week ago
It’s column plugging time again.
This week it’s about meeting Chris in a coffee bar and him telling me about a therapy that I’d never heard of: ‘What sparked my interest was his story about how he ended up in bed for two years with a totally dead leg, and then restored it with some sort of electrical therapy. My right leg has been immobile for…[Read more]
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John Connor posted an update 3 months, 2 weeks ago
@lucia Hi Akiko,
See u joined us 8 months ago. Has our Forum helped in any way with being a carer
for your husband?
If not r there any resources I can drum up that might help. Sure u’ve been scouring the net like we all do. U never know though!
Cheers John -
John Connor started the topic The Tricks of Intermittent Catheterization When You’re in a Wheelchair in the forum Living With MS 3 months, 2 weeks ago
Yup, a plug for my latest column. The title is about the methodologies I’ve discovered to wear trousers that also allow me to pee using a catheter.
If you also use a wheelchair and catheterize, how do you manage? Any tips?
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I regularly walk in my dreams. In fact, I was doing it last night…and doing it quite well.
Anyone else here been dream-walking lately?
Ed