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WHAT PEOPLE ARE REALLY THINKING ABOUT MS (2)...

THE 'FILTERED' WORD IS  'SH*T'

SORRY BUT I DIDN'T SLEEP WELL LAST NIGHT - I'VE HAD MS FOR OVER 13 YEARS AND MY 'SUPRA PUBIC' CATHETER DIDN'T WORK LAST NIGHT AND I WOKE IN A 'PUDDLE' FULL OF PISS.

ALTHOUGH THE SUN IS ATTEMPTING TO SHINE TODAY.

MAYBE I SHOULD JUST 'SHUT UP' AND GET USED TO THE FACT THAT I AM GOING TO DIE WITH MS (I'VE JUST TURNED 56) - IT'S ALL VERY WELL SPENDING THOUSANDS (PERHAPS MILLIONS OF £) ON A CURE FOR MS - BUT WHEN WILL IT BE? - THERE'S PLENTY OF MONEY BEING SPENT ON THE 'IDEA' OF HUNTING FOR A CURE - BUT WHEN ASKED FOR A DATE? - IT'S THE SAME OLD RESPONSE...'WELL IT COULD BE..., IT MIGHT BE...IT'S DIFFICULT TO KNOW?...TO BE HONEST ... 'I DON'T KNOW!!!'

Marcus.

What are you sorry for? Why should you shut up?
You are perfectly entitled to be feeling less than wonderful given the circumstances. And to add insult to injury you can’t even have a good swear without making it acceptable to all first!
As for a cure…hmm not in my life time I don’t think. :frowning:
Julia x

So why are they spending millions of '£' telling us that - before I developed 'MS', I was a director of four successful garages in the motor trade - I think I know when people are talking a lot of nonsense!!

Marcus.

(Oh and I have been to University and went to a fee-paying school and I have friends and relatives who are 'advocates' in law)

A cure is a long way off. Surely before you can even start to look for a cure you have to find a cause. There are loads of theories and speculation but still nothing concrete. Unfortunately with every ‘new’ find the press have a field day. Leading to huge hype and speculation and little else. So it always seems that they are on the edge of a breakthrough

Pardon me, Julia - I was 'mucking about' with another computer. Yes, you are right and don't type if you don't  want to . I'm away to get some rest? - thanks.

Marcus. x.

Marcus - do look up the website - Streetsie - run by a chap [disabled] who knows more about spc's then anyone. l think l just googled supra-pubic catheters when l first came across the site - based in US.

You can ask him anything - man to man.

Back to the trouble you had with the spc last night. l did advise about having less tubing - short length cath and direct valve bags. lf the tubing kinks it causes you to 'back flow' [ just made that term up!]  You will soon get used to it - l know its a bit demoralising when it goes wrong - but it is only a blip.

F.

My neurologist said stem cell treatment is “5-10 years away”. Somehow I don’t think they’ll cure me then :frowning:

my brain and body aint connected anymore,,my brain thinks an idea,and my body says wtf ur kiddding,,lol,marcus it is just a bad day for you,we all know tomorrrow is another day,a positive day,,chin up,we all show tthis illness who is the boss,,and it aint MS

[quote=“mogworks”] My neurologist said stem cell treatment is “5-10 years away”. Somehow I don’t think they’ll cure me then :frowning: [/quote] I’ve been following the research for years and it just makes me want to weep at how they keep making the same mistakes and show no understanding of how the body works.

I was looking at some vit d MS research earlier “A randomised, double blind, placebo controlled trial with vitamin D3 as an add on treatment to interferon β-1b in patients with multiple sclerosis” The full text is online if you want to read it and be even more depressed.

First they used a SET AMOUNT of vitamin D for each person.

We should all know by now that the dose response to vitamin D varies 100ng/ml or 250nmol/l for each different daily intake. So you can’t give two people the same daily intake and expect the same result.

We need researchers to raise 25(OH)D levels to a set point such as 125nmol/l where we know Vit D exerts it’s most powerful anti inflammatory effect and keep all the trial participants at that level for 2~3 years and then measure the difference.

We also know that to get from the circulating plasma levels as measured in 25(OH)D tests to the active vitamin D hormone we require MAGNESIUM to operate the change.

We also know most people don’t get the recommended daily amount of magnesium and the RDA for magnesium is set far too low. People would be better taking more magnesium and less calcium. So any trial that doesn’t correct magnesium deficiency at the same time as trying to improve vitamin D status is bound to produce unsatisfactory results because although they may raise Vit d to an acceptable level if they don’t also correct magnesium there is no guarantee that vit d can be used effectively.

Another vital part of our anti-inflammation mechanism is omega 3 found in fish oil. In fact the DHA omega 3 also acts on/binds with, the Vitamin D receptor as a VDR Ligand. So correcting vitamin D and magnesium deficiency is only part of the story. If we want Vitamin D3 to work we also have to do this in conjunction with correcting omega 3 <> omega 6 imbalance. We all consume far too much corn/soy/sunflower/ omega 6 pro inflammatory veggie oils. If we had 20~30 hooligans throwing petrol onto a fire and just one fireman trying to stop the blaze he wouldn’t have much success. In the same way if we want to see the benefits of anti inflammatory substances like Vitamin D or Omega 3 then it’s absolutely no good at all just using trivial amounts of the active ingredient while at the same time allowing the consumption of the omega 6 oils that negate their effect and promote more inflammation.

Humans evolved eating only omega 3 rich free range organic meats and veggies. We also evolved to live mainly outdoors wearing little if any clothing so we made the anti inflammatory anti oxidant vitamin d3 from dawn to dusk. And from dusk to dawn we had no electric lights so from dusk to dawn it was pitch dark and we made the anti inflammatory MELATONIN from dusk to dawn.

If we had a problem with our cars fuel consumption we would expect the garage to ensure the correct air pressure in each of the tyres. Common sense would tell us that simply inflating one tyre wouldn’t solve the problem. Here we have a body with deficiency states in all four tyres at the same time. Most normal people have too little vitamin d, magnesium, omega 3 and melatonin because of the way modern foods are grown/processed and our lifestyle/environment limits melatonin/vitamin d production. If we want to see the impact of correcting our current inflammatory state we have to do more than look at one aspect at a time. Until we see researchers understanding inflammation as a whole rather than specifically tied to one aspect of the problem we won’t get any useful results.

It’s simply applying a little common sense to the problem. I can’t see research ever solving the problem but people like Terry Wahls have led the way and I think the sooner indiviuals understand the basics of how humans evolved to function the sooner they will probably make greater headway than relying on researchers for the answer.

Thanks for your replies - The catheter one now seems to be OK but I'll keep an eye on it - I don't have any choice and I have been to the Streetsie website briefly before but I'll go back and take another look. The 5-10 years one means I will be 61 to 66 - not a 'comfortable' prospect but I've no choice - I wonder if I will still be here and sending 'annoying' emails? - I don't know? (and neither does my doctor who has a 'close' relative with MS) - He is honest though because even he says he doesn't know.

Marcus.

Hi Marcus,

 

30 odd years ago my neurologist told me "a cure is just around the corner".

 

All I can say is "this corner must be never b****y ending".

 

Pam.

Thanks for the replies which I got while I was typing. I agree with 'Wellman' and the extremely, extensive reply from Ted Hutchinson. My thought was that it must hurt to type all of that if you have MS but thanks anyway (I haven't read it all yet - but only skipped to the last paragraph to read the conclusion) - I do like the writing though.

So after all of that - I'm still no further forward and I will still have to tell people that I don't know - Maybe if I tried to contact the 'supernatural', I would get a better response?

Marcus.

("What did you do on Wednesday?" - "I typed for 5/6 hours but didn't find out any more about MS")

Hi Marcus, I hear you. I'm nearly 59 and know there won't be a cure in my lifetime. Everytime there's something in the press about a cure my family are like 'oh there's a cure!' They can't understand how I really can't hear this anymore. It's better just accepting it. Waiting for a cure does your head in.

Pat x

Thanks Pam. Your response brought a smile to my face - I only wonder how much they pay Neurologists to say things like that? Must be worth it (for them) as they say that time after time after time.

Marcus.

Hi, Pat - 'you hit the nail on the head' - almost think that MS is a 'money making' enterprise making 'some people' very rich - WHY CURE IT? IT'S MAKING LOADS OF MONEY AND GIVING LOTS OF PEOPLE LOADS TO DO.

Marcus. (My thoughts have a 'socialist' ring to them and I know that 'some people'? are doing all that they can - but how long is it going to take?)

Hi, again Pat. I re-read your message and I get the same. My wife and my young daughter (9) want to know when there will be a cure? I'm 56 now and I don't know when I am going to die? - How do you tell that to a 9 year old child?

Marcus. x.

It’s hard when others genuinely believe they are helping. Colleagues at work and family often cut articles out of the paper making all sorts of claims. My dad in particular has been known to send off for ‘herbal’ tablets claiming miraculous results for MS. Have no idea how much he spent but he phoned me every few days to see if I was feeling better. Didn’t have the heart to tell him I never took them
Julia x

Just got a 'trendy' video from the MS society asking when you were diagnosed - who cares,? - I have had MS for 13 years and no blo*dy cure. How much did it cost and how many people did it take to make? No guidance to when a cure will be found!

Marcus.  

Nice one, Julia - I'm a father as well and you try to do the most you can for your loved ones - please don't blame yourself for 'not taking the tablets' - it was your choice 'in the same way' as it was your dad's choice to show that he cares for you - every body is happy (including the company that sold you the worthless tablets) - My point is that MS is a money making strategy and it's not because I was turned down for an 'admin' job at the MS Society even when I've been a director of 4 garages, When will there be a cure?

Marcus. x.

Marcus I have no idea but intend hunting for it at the bottom of my bottle of Prosecco this evening! I am sharing this info cos it’s supposed to be bad to drink alone. Well I am not now am I? :slight_smile:
Cheers
Julia