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Viewing 15 posts - 1 through 15 (of 54 total)
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  • #18596
     John Connor 
    Keymaster

    Hi H,

    I wrote this  column a couple of years ago about the supplements I take.

    Since then research indicates that St.John’s Wort might be helpful to inflammation in MS I’ve added that.

    Cheers John

  • #18505
     John Connor 
    Keymaster

    Er, absolutely.

    I was 49 on diagnosis and it turns out we are likely to have a highly active MS.

    At my age aggressive DMT’s should have been prescribed. They weren’t!

     

  • #18501
     John Connor 
    Keymaster

    Hi J

    I’m actually a stage comedy producer. The show is nearly 30! I’ve run it for the last 10 with MS. Now, I get significant help at the venue where the lovely doorman go into reverse & throw me into the venue!

    It’s a topical stand up show – one of the gags I got in this week was ‘A spy stole Abu Bakr al-Baghdadi’s underwear which was then DNA tested and used to prove his identity. The scientist said the sample was ‘Really good shit’!’

    I’m 62 you know……

  • #18500
     John Connor 
    Keymaster

    The CBD I use is ‘Love CBD Entourage‘ from Holland. As to smoking the real thing –  I couldn’t roll a joint even when I was well! Hey, ironing was also beyond me…. Liquid marijuana is the way to go. I now have a nightly ritual of a cocoa to which I add a touch of Cognac and towards the end a few drops of the magic elixir. This has the double benefit of giving a superb rest and when I get the munchies am by then in bed. It really then is far too complicated for me to do feed it.

  • #18472
     John Connor 
    Keymaster

    Hi J As a fellow writer [admittedly MS has actually got me back into it!] ‘cog fog’ was pretty awful. I was trying to organise a particularly complex part of being a producer [my other job…] & felt I was doing it from the bottom of a lake…. I couldn’t even wave that I was drowning!!!

    Loved Gilenya but unfortunately it didn’t hold back my own insidious version of MS. However it will do nothing for the ‘fog’. Eventually got myself on Modafinil. It’s worked a treat.

    And had the cool side effect that my newly graduated son being aware that it was the illicit drug of choice amongst studious society.

    Cheers John

  • #18454
     John Connor 
    Keymaster

    As  a kid I was good at cricket but not when I played against those that were really good. Instead of being an intimidating fast bowler someone on their way to professional cricket would just tonk me round the ground!

    So, our bodies never work as good as we’d like.

    MS is awful but in a chaotic universe some machines just break down.

    The one thing I can still do is write. I’d stopped for thirty years. So u can find an upside.

  • #18426
     John Connor 
    Keymaster

    Like all the supplements I take for MS have no idea if vitamin D3 does anything – it’s just they might. And besides the cost their’s no real downside. Wrote a column about it early last year! 

    As my wife is keen to point out I was always an arch-skeptic about ‘alternative’ anything. I still am – everything I take has to have a snippet/root of scientific inquiry about it. That’s why I’ll never swallow anything dealing with homeopathy!

    The one outlier in all this is CBD/marijuana. You can’t have MS and not know all the reports from other sufferers that  it helps. As I’ve led an ‘alternative’ working career this was a drug that I’d spent time with. So now I tried it for more than just fun. The results were outstanding, indeed I know find it a necessity!

    It’s still illegal in the UK for all but a few for medical use. Please don’t grass me up….

     

  • #18402
     John Connor 
    Keymaster

    I am one of the Europeans [Just! Brexit gag klaxon!!] on Ocrevus. Not easy to get in UK….

  • #18394
     John Connor 
    Keymaster

    Hi Jono

    Stem cell therapy comes with 1-2% risk of death!

    But if it works it freezes you were you are now. Loss of feeling in your fingertips only is something to be grateful for! The longer u leave it – the worst u’ll be.

    No one knows how fast/far progression is though.

    Stem cell treatment wasn’t around 10 years ago when I was in your position. If it had been I hope I would have fought for it.

    Copaxone I found a pain in the arse – even when I wasn’t injecting there!

    It’s actually v.mild against more aggressive therapies like Gilenya. With that though it’s just a pill a day. Which I found heavenly.

    Neurologists tend to prescribe the heavier duty stuff when the others fail.

    I do suggest you familiarize yourself with all the DMT’s. There’s research looking into early use of more aggressive treatments  here.

    Cheers John

  • #18381
     John Connor 
    Keymaster

    Hi Jono

    ‘Nobody knows anything’ was screenwriter William Golding’s [Butch Cassidy…/All the President’s Men et al] famous quote about Hollywood. But it’s pretty apt about MS. Senior neurologists have at various times claimed they’re not even sure if MS is one disease! Besides the many consultations with neurologist’s there’s also innumerable  lectures and MS events attended. So my impressions are smeared through numerous interactions. The experts know loads – it’s just still incredibly complex!

    I’ve ended up in a wheelchair so I suggest an adaption of the homily given by my first neurologist ‘Use it or lose it’. Experience has adapted this to ‘Use it, before you lose it!’ I played wheelchair tennis for five years – I even had to start the whole thing locally. So get into stuff today – don’t wait for tomorrow.

    Most MS’rs don’t deteriorate at the speed I have – another homily is ‘No two the same’. It doesn’t hurt though to not put stuff off .

    Good luck with everything – I started out thinking I’d get through it somehow. I’d also always ploughed something of my own path – you’re already streets ahead by searching for advice so early.

    Cheers John

    • This reply was modified 1 month, 1 week ago by  John Connor.
    • This reply was modified 1 month ago by  John Connor.
  • #18364
     John Connor 
    Keymaster

    I find MS means ‘Self Love is exceedingly Soft!!’……Smutty….

  • #18252
     John Connor 
    Keymaster

    Sure do! OUCH!!

    In UK we pay for it unless over 65 or suffering a med condition. Have done ever since had MS.

    Also work with comics who are obviously peripatetic and therefore more likely  to hit outbreaks. Can lose serious money if they have to take week off – if Christmas it’s a disaster. Have convinced a few to pay for it. Even if they get flu the jab tends to reduce longevity.

  • #18197
     John Connor 
    Keymaster

    Good news – except for the recent report ‘Here’s Why Drugs That Work So Well in Mouse Brains Often Fail Miserably in Humans‘ Of course this might not hold for rats……

    • This reply was modified 2 months, 1 week ago by  John Connor.
  • #18189
     John Connor 
    Keymaster

    Hi Ros [& indeed ED] The news from the UK is that the modifying therapy Ocrevus has only just be allowed for use with Progressive MS patients. This was finally agreed in May of this year and supposedly should be available to such patients from now – September 2019.

  • #18159
     John Connor 
    Keymaster

    It was a wonderful revelation to find that the ‘Supernatural‘ fantasy-drama series has mysteriously [long story] appeared on Netflix. The story about two brothers who hunt ghouls, ghosts, vampires et al and hang occasionally with a  very chilled god and fight with the very odd demon would you think last for a few series. But it roots itself in hip ‘pop’ culture and  is often wryly funny – writers who regularly reference cultural gods like Kurt Vonnegut know what they’re doing. It’s been my guilty pleasure for years and I’m obviously not alone as 14 series are available. Unluckily I’ve seen the first 13. Luckily I’ve now got the 14’th to burn thru. And I never did get to see the pilot till yesterday. An atheists prayers have been answered.

    Anyone else a fan?

    • This reply was modified 2 months, 2 weeks ago by  John Connor.
Viewing 15 posts - 1 through 15 (of 54 total)
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