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MS for 35 yearw

Very tragic about Debby Purdy but I need to confirm as someone with MS for 35 years that the majority of us live a normal life-span even with the disabling symptoms. I am now 74 and 75 in July. I have seen it all. So I repeat the majority of people with MS live a normal life-span. For the New Year I recommend a marvellous book published in 2014 and to be serialised in the Daily Telegraph in 2015: “Oxygen and the Brain. The story of Our Lifetime” by Emeritus Professor of Medicine Philip James.

I have personally used the oxygen treatment for 30 years but please read the book and be amazed.

Happy New Year to all

Regards

Rob

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This is encouraging, just as I was wondering why it seems to be beyond the wit of the boffins, after many years and many millions of pounds spent on research, to come up with an effective treatment to slow down or stop the progression of this illness. I was only diagnosed nine years ago and am already very limited in what I can do. I’ve not been able to live independently for about six years, and am getting steadily worse. I live in hope. I’d actually settle for not getting any worse!

my new years resolution s to make the effort to go for HBOT.

maybe tuesday i will!

carole x

Hi Rob,

were you Christopher ? i used to talk to a Christopher a few years ago on here about HBOT.

Would this be the Professor Philip James who does not know the difference between Hyperbaric and Hypobaric?

Geoff

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Hi Rob, my sisters MIL died a few years back she had MS over 40 years and was about 85 I think when she died of complications to her DIABETES.

In all the research i have read, many thousands of people live with MS successfully all their lives and work and have a good life too. I have met lots of them…

There is enough negative rubbish out there about MS we need lots of positive stuff.

Its like any chronic disease its how we cope with it…

I remember when i taught I.T. in a local college (before my diagnosis), I met a lady who had MS and she was always in a wheelchair. She struggled to get a diagnosis but eventually did. She was about 52 i think. She was lovely and amazing and wanted to learn all about the computer and we were together 2 years at least and she passed loads of exams. I got her to do research about MS at the time, and she came upon HBOT and there was a centre in our local area, which she got recommended to, and within 6 months she was WALKING. It took time to get her muscles back, but she walked and as far as I know (we lost touch when i got sick), she was still walking and still using that centre. Her story has always touched me…

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Well done Carol and good luck with getting started this New Year. I am confident you will be helped a lot by the people running the MS Therapy Centre. I still have MS symptoms of course and HBOT is not a cure but the idea is to try to slow down the progression. Or as I like to put we stay upright longer. It does seem that some drug therapy also slows down the progression or reduces the number of relapses.

So I hope you will get started with HBOT asap.

Regards

Rob

I am just Robert.

Regards

Rb

I don’t know. But as you are a Dr why not ask him? He is on line I suppose and a lot of stuff on Google about him.

Regards

Rob

It is amazing how people cope and deal with it. Thank you for the account of the lady who got help with HBOT. As I tell people I still have MS symptoms but it has taken a long time to ge where I am today. Very sad about your sister’s MIL and in the book I mentioned there are amazing photos of diabetic wounds being cured. It is unfortunate there is still so much ignorance about MS but we can all try to do something to clear away the fog.

Regards

Rob

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Well, it is yourself that is praising his book (and on two different threads, as well).

Geoff

Could be because they have been looking in the wrong direction - the aurtoimmune theory as the main cause of MS.

For example:

“The central tenet of auto-immunity postulates that the immune cells of the body attack normal tissue. Somehow, it is postulated, a component of the normal tissue becomes an antigen in multiple sclerosis patients and is said to attack the myelin which forms the sheaths around many nerve fibres. However, a trigger is usually suggested which initiates the sequence of events. It is usually claimed that it is a virus. However, no virus has ever been found in [more than 60] years of research; which has even included biopsies being taken from the brains of patients during acute attacks. Equally, no antigen has ever been identified in normal tissue. Despite the lack of scientific evidence the viral-auto-immune theory is often presented as certain fact.” p240 “Oxygen and the Brain”

Apparently the direction should be the damage to the BBB (Blood Brain Barrier).

Rob

Well I have read it - twice. It does not look as if you have read it. I am often intrigued by people who have no difficulty in forming an opinion on a subject about which they know absolutely nothing.

I think freedom of expression is important.

Rob

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Oh I quite agree. That was what made me curious. I would never dream of querying Prof. James knowledge of hyperbaric medicine - but when he is quoted on the website of Castle Craig Hospital (yes, the one you praised a few weeks back) as saying that every commercial airliner cabin is a hyperbaric chamber, then it becomes clear that there are some things about which he knows absolutely nothing (but is quite willing to be quoted about)…

As for his book …it does not seem to be known to Amazon (UK or US) Waterstones, or Barnes and Noble. Care to comment?

Geoff

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Me? No, I am a nobody with MS for 35 years and who has used HBOT weekly with benefit for 30 years. I don’t know anything about publishing. But I do know that two of the richest people in the UK, the Barclay Brothers, will be using their newspaper the Daily Telegraph to serialise the book and hopefully during the next month or two. As for medical science, I only only have a BA(Hons) in history so I cannot comment. I rely on the professionals. You obviously know more about it than me so I think you will get a proper answer to your comments from the Prof.

Rob

tried to follow this debate, really interesting contributions - thank you all!

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I do think there is a lot of misinformation about MS to be honest. The trouble is too Googleitis doesnt differentiate between the good stuff and the rubbish, so people are being misinformed not because they want to be but because Google is just a database like a library actually and it goes off and finds stuff beginning with the letters MS, and comes backs with books and literature full of articles about it, but unless you actually know what you are reading about your brain will simply overload on all sorts of stuff 98per cent of it being rubbish.

The other big problem too is, NEUROLOGISTS. Oh yes dare i say it.

So many of them have their own ideas about MS and other diseases. Until they all get on the same page we are doommmmeeeddddddddd lol.

I think MS is like any other long term chronic illness it isnt a special illness it is MS. My Grandfather had Parkinsons and he suffered terribly in those days even worse then now as they still put Parkinsons under Functional Neurological Disorder, and hey some people with MS get FND to even now, and some neurologists called Parkinsons a functional neurological disorder too.

Lupus is a long term chronic illness and my father ultimately paid the price to it, as his kidneys weakened he got septicaemia after a routine operation and i sadly lost him at 75 years old, and this is the guy who fought in the war. Every day for years it was agony to walk, actually looking back on it, he had all the MS symptoms too but he never gave up.

Diabetes is the pits, and causes so many horrible things omg I know people who are blind and some have lost feet with it.

What disease am I describing?

Common symptoms at the time of diagnosis are fatigue, problems with eyesight, stumbling or numbness, pins and needles, burning sensations.

MS you say?

Yes but also: ,M.E/FIBROMYALGIA/LUPUS/RA/LYMES

The one thing with MS you rarely if ever die of the disease, you die with it. With proper medications, attitude, diet and mind set you can live with it and along side it for all your normal life span.

I think the biggest problem for people with MS…is the words … MS what it triggers in their brain…loss a big loss of their life, and doom…

I have never thought that way personally. I have had many horrible things happen to me medically wise, and am even now struggling with maybe a new diagnosis of TEA. Not tea for two lol but Transient Epileptic Amnesia. Hey ho only I should be given another rare disease to cope with lol…now what did i do in my last life to warrant that he he.

MS is challenging of course it is, and it is scary, but now there are so many new things coming on the market and loads more research happening. I know of many young people now with MS, at university and planning for their FUTURE. Thats what we have to do, carry on planning for our future with MS and dealing with its fall out every now and then as best we can.

I also think we have to learn ourselves how it effects US. Not someone elses MS, as everyones MS is different. What might work for A, might be the worse thing for B.

Contrary.

A, finds the cold makes spasms worse, so sits by fire or has hot baths.

B, finds the heat makes the spasms worse so sits outside in the cold lol…

Learn about your own MS, not someone else’s. Challenge it. Make friends with it. Give it what it wants. If you find that going gluten free makes it happier, then go gluten free. Lots of MS simply hates alcohol and fags, so if you do both, be warned about the consequences lol…as it will surely bite you in the bum literally with some nice stinging paresthesia lol…

Yep learn about your MS, what it likes and what it dislikes, keep a diary. I did to start with and now i am comfortable with mine as I know what it wants of me. If i go over that line i get a little reminder lol…

I am 63 and i enjoy my life. My sister is 68 and in the last 18 months has sadly had to loose both breasts to cancer in two major ops. In a large family all are survivors (my mum is 92 and she has sisters similar age), only one other person had breast cancer a MALE our uncle in Italy.

What were the chances my sister would get breast cancer? She neither smokes and rarely drinks, goes to gym and eats healthy she still works. Life throws so many curb balls at us, whilst we are worrying about our own illness, others are also suffering and adapting too.

Nah I have MS but do you know what? I would rather have MS then have to face what she has to face right now.

At least I know where my body is taking me, right now she hasnt got a clue.

So lets stop stressing over MS and live with it, and help to research it, and keep active, and live our lives the best we know how, there are no guarantees in this life, and I for one am not giving up because life is tough right now, if that was the case I would have given up many years ago…but i didnt and I was blessed to see many more things. I love life as it is, MS and all it throws at me, as i wake up in the morning, and see the sky, and hear the birds, and look at my hubbys face, i know I am at peace with myself and still have a lot of living to get through lol…

I might have MS, but MS doesn’t own me, I allow it to stay yeh it bites my butt now and then, but then I bite back because i wont let it win…

Coping with MS is a mindset…xxxxxxxxx

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Goldengirl 63 - What a good username - l love your posts - you think very much like me - yes you are a Golden Girl!

Happy New Year to you and your family.

Regarding the subject of HBOT - My brother used to be a professional deep sea diver. And frequently had to use the Hyperbaric Chamber. l asked him what he thought it would do to help me. He said that it makes everyone ‘feel better’. l live too far away from a MS Therapy Centre - otherwise l would have used it.

l shall stick with my LDN - which for me works so well.

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Rob - please let us know when the Telegraph starts serialising this book. Like you l have had MS a long time - coming up to 33yrs.

Mine has never been RR - always PPMS.