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MS cures

Keep seeing all sorts of new drugs on the internet for serious illnesses for which is great news for those people affected.

But with MS never see any new drugs apart from trials for more DMD which we have plenty already perhaps there is more profit in these.

What about research into repairing Myelin or drugs to stop the immune system attacking its own body.

I am now 68 and time is running out for a cure for me, is it just me or am I missing something.

Can any one cheer me up with some good news

Bertie

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well Bertie if you feel pain, you must be alive. that was the good news. it is a veritable crock of cr*p but we do our damnedest to muddle through. i read something about myelin repair but can’t remember where or what. i’m sure that i used to be clever but now it’s a good day if i know my own name!

Hi Bertie

Do you get the research update that’s included with the MS Society’s magazine? There is research going on into things like myelin repair. Here’s something that looks promising - https://theheartysoul.com/cambridge-scientist-on-verge-of-curing-multiple-sclerosis/?utm_source=VIRALSLOT&fbclid=IwAR2tkKsGi-dCGN__rq6vbNyHHg0eLI5IxOqyUuHtoQyrv9bCeTCE5UKZNCo

Dan

Ah me too 68. I am just thinking to be honest at like errr our age, we have a lot of cracks to negotiate i.e. potentially so many things can go wrong with us at 68 every day is like a bonus. I lost 2 friends in 2 months to bone cancer, my hubby to COPD, and nearly all my mates have arthritis, osteoporosis, dodgy knees or replacement hips the list is endless. My husbands sisters husband (sorry about that whatever he is to me), very healthy guy they walk every day, ended up rushed into hospital with a clot in his lung and he doesn’t smoke. Yes he likes his whiskey lol but does not drink a lot. they are vegan and exercise regularly. 2 of my sisters friends had strokes, and my sister had double mastectomy, all over the age of 60.

So knowing my blooming luck if they did suddenly stumble over a cure I would not have the time to benefit from it anyway lol.

So i have given up and just enjoy what life i have left and hope i dont fall into one of those nasty cracks which come with age.

I actually feel they have a cure but they dont realise it lol. If you can repair an electric flex then you should be able to cure the mylin sheaf i mean how hard can it be lol.

I think you have to fight it back with disease, so the auto immune is so busy fighting a new infection it looses its grip on our flex lol.

right?

I am supposed to be seeing my neuro 16th to talk about ocrevus but reading about it i think i will pass and give the chance to a younger person, not sure i want to go through all that just to get sick on top of being sick lol.

Good to read your comments. Noticed you mentioned Ocrevus, have commented on this before when I saw my neuro she said 12 months ago I am going to put you on it but it has to go through a committee for approval at Salford Royal, the committee said no because I had not had a relapse in the last year. Another brick wall May put new tread up about going private for MS and see what answers I get, because I am pretty desperate to just to improve by say 15%

I think alot of things are controlled by the drug cartels, sorry companies, if they ever get a cure for us they will lose billions - i would love something that even would improve quality of life and take away the fatigue but we all live in hope.

I wish someone would look into the JC virus, this has stopped me from being able to have tysabri as the risk was very high.

MS is incurable, progressive and permanent. Fact Of Life. there are DMD’s if you are suitable. There are treatments but hey ho.

I’m 62, so no spring chicken either. Frankly I’m enjoying what I CAN and sod the rest!

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Hello David

I think that sadly, Reddivine is right, MS is incurable. Although there is plenty of research going into remyelination, drugs to help symptoms that are not DMDs, potential cures for the future maybe. There is a great blog from the Barts team of neurologists led by Professor Giovannoni: https://multiple-sclerosis-research.org/trials-and-studies/ Have a look at that, also the research button on this site. You’ll see that there is a lot of research going on into cures as well as drug therapies.

At the age of 52 I am way too advanced in my MS for any ‘cure’ to help me. Sadly I think there are very many of us who post here regularly who like me, accept that a cure may come along in years to come. But that will be way too late for me.

Sue