john-connor
Forum Replies Created
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Ed – have just e’d my Neurologist about this. x
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Hi Sue,
No vaccine can be 100% safe but the Covid ones seem to be remarkably so from the reports in the news of record. Especially as 6.59 billion have been estimated to have been given worldwide.
We humans r exceedingly good at conflating two things as cause and effect when there actually maybe no link. Hence the damage done & still happening by the spurious link between MMR & Autism.
It did have an effect on one of my comorbidities. A severe Trigeminal Neuralgia attack. But loads of people do have bad temporary experiences. Better, however than the real thing!
MS does suddenly erupt into sometimes catastrophic relapses when u’re still RRMS. Now I’m SPMS it’s a quieter, slower deflation!
Cheers John
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Ta Ed
That’s a lot of ammunition for a British bloke.
I’ll give it a shot!
JC x
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Feel bad as I live in UK and we have ‘Motability‘ charity that leases scooters/cars/vans to the disabled.
It has its limits thou – had to pay circa £20k for the adaptations needed for my van. Has a wheelchair lift. Also spent a good proportion of that on specialist movable seat so I could drive it. Hit by pandemic & MS relapses so now can’t. Hey-ho.
Think UK Gov provides funding to the charity. -
Maybe it’s a combination of MS and lower Oxygen levels at altitude? MS has very strange effects on our bodies. Most of us get overwhelmed by high heat. It turns me into a rag doll.
Many collapse in the cold – no effect on me whatsoever.
Our skin takes longer to heal from cuts.
It seemed to give me lymphoedema within a few years – even though I was active. Again, I don’t think there is any proof of this except for the circumstantial evidence.
Bravo for all your exercise. A truism among the UK medical establishment is ‘Use it or lose it’. From my experience it’s the more pragmatic ‘Use it before you lose it!’
Cheere John
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Hi Stephen,
I echo Jilly’s answer.
Just looked up your profile & see that u’re in the US. Don’t know enough about your health infrastructure as a Limey! But here would reach out to the UK MS Society et al for help/advice.
Also u must be a paying client – there must be a complaints procedure?
If u r on your own [no family support perhaps] it must be hard to make a stink. But I was always a fighter in my own way – in my case political correctness in comedy in the 80’s. Not the extreme case u have now BTW!
I found that this all came in v. handy to fight the innumerable battles that being severely ill get thrown at u. U’d think society would make it easy on us but it’s always the most vulnerable that often get short shrift.
There must also be a medical authority complaints procedure.
Of course if it’s like ‘One Flew Over the Cuckoos Nest’ ignore all that. Just hope u’ve got a huge native American friend to sort it!
Best John -
Yup, usually excessively glad of it when offered by strangers.
Sometimes with the fam struggle away making lots of noise – determined to do something. Get told off [a] For making excessive noise [B] Not simply asking for help!
Have no idea why! -
I really can’t remember any.
There were probably some when I worked with comics. But that would be extreme one liners for laughs! There were no boundaries. What happens backstage, stays backstage. -
Hi Shorty
U could also do a Ripley at the end of Alien 2 & fight any passing Xenomorph’s!
According to NASA they might be out there….
Cheers John
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Hi Jilly
Big welcome to u.
I’ve even been to Christchurch circa 1992.
Loved the South Island.
But as a lover of art deco was in heaven in your city.
Cheers John
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Hi Chris
Knew nothing about Rituximab until I found this news column on our website!
As to cladribine/mavenclad it’s not licensed for SPMS in UK & only hoping to get on a trial!
Cheers John
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Congrats for passing it mate.
A good flowing read, much like your driving!
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That’s quite an achievement if u passed it Ed, Even if I was able bodied I’d struggle to pass a UK driving test today. They’ve got a lot harder and I’d resent the time [and money] it would take to do it!
Precociously I took my first test on my 17th birthday [our legal age to start driving in the UK]. Of course I failed, not because I couldn’t drive – I just couldn’t drive for the test! Had six lessons with a v. skeptical instructor. Want back and passed.
Now, I can’t even get into my ridiculously expensive, adapted drivers seat!
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Hey Shorty, all your replies r very commendable. Get a lot of response to my columns but not so much on here! And this is supposed to be a space for discussion.
Ask away about info, I probably won’t know it, but Ed my co-moderator probably will!. He’s had MS for 40 years & has been writing about it far longer than me.
Cheers John
#
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Ta Yvonne. I’m not that altruistic there is a stipend involved.
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Hi Chris,
Sorry I can’t be of more help – as this has got into an area that is well beyond my knowledge.
As ever, Ed is right about Ocrevus. Because I took it quite soon after Lemtrada it smashed my immune system to pulp. Mind you Lemtrada is also scary and does cause cancers.
From the embedded link above, ‘Lemtrada may cause an increased risk of cancer, including thyroid cancer and melanoma, according to the drug’s black box warning. The warning advises patients to have a skin exam before treatment to get a baseline and to continue exams yearly after.;.
I have no experience of Tysabri I’m afraid. However I do have experience of not being on a DMT – I was heading for SPMS but Ocrevus was holding it back.
Perhaps you could ask your Neurologist and Oncologist to discuss your case together?
Best John
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Hi Chris
Like Ed I’m the other co-moderator of this site. Also an MS patient so can only pass on my own experiences.
I have to disagree with Ed, I also had Lemtrada and wish I hadn’t! That though in not my point – we can all react differently to drugs. It seemed to me a very aggressive drug that was first developed to treat certain versions of leukemia. So if your body has been racked with chemo it is perhaps a DMT to avoid.
You could perhaps research Ocrevus. But do not know the problems that a JCC virus causes with it.
As ever you should discuss things with your own neurologist. as long as you’re still Relapsing-Remitting there should still be a DMT to try.
Best John
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Mine is def the heat: ‘Here Comes the Sun, and it’s All Too Much‘ .
Can’t now get into my pool. Looking to have a hoist fitted. Will cost an arm and a leg. Luckily I have both that don’t work properly!
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No need for commiserations Ed. I’m a republican – in the very British sense. I’ve always been against having a monarchy. I’m sorry for the Queen, but no more so than for anyone who’s had such a long successful marriage & just lost their partner.
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Like cricket, baseball is impenetrable for those that don’t understand it But loved in its complexity by those that do.
I don’t understand baseball but deeply loved ‘Brockmire’!
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Mea culpa x
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Well, if u end up in a wheelchair like moi. U now only take chunks out of the wall!! Actually my drinking levels have dropped to safe levels. Drat!
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Hi Lola
I don’t know what to say – which is rare for me.
It depends on where you live, of course, but their are usually MS support groups around. MS exercise classes also usually have a social side
If none of your ‘friends’ or family are willing to understand other MS patients sure will.
Best john -
Good for you mate. I did a similar thing recently when about to go home from hospital and the doctor refused to remove an indwelling catheter. I had a whole ward, nurses & 2 ambulancemen [suppressing snickers] over my threat to do a lie down strike. It was an away win. x