Promising news

This was the result of MSS funding, so good to see cash being well spent.

"Working with researchers in Australia, the Cambridge team administered the diabetes drug metformin to rats for three months before they had an injection that stripped myelin off some of the nerves in the brain. The rats continued to receive the drug for three more weeks afterwards.

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This is the Barts Blog take on it.

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echoing ā€˜whammell’ - lets hope someone thinks outside the box and identifies all those who have diabetes and m.s. and are on metformin and sees how they’re getting on. Of course what would be interesting would be finding that there aren’t any diabetics who are being treated with metformin who also have m.s - this would suggest that the metformin they’re taking protects them from m.s. On the fasting point I find the less I eat the better I feel - it’s not what I eat but the amount that seems relevant.

I’m Type II diabetic and I’ve been on Metformin for the last two months let’s just see how things go, i’ve already managed to get my HBC1A down from 61 to 53 and lose some weight which is quite an achievement for me. But getting rid of MS as well could prove a massive unforeseen bonus. Given how cheep Metformin is why not give it to everyone and monitor their blood sugars?

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I’d be happy to test my blood sugar and eat a bit more sugar if necessary!!

although it has some horrible side effects i think it would need to be closely monitored.

On the subject of fasting, is it the actual fasting and sudden drop in calorie intake every few days that seems to have the benefit, or is it going on a diet and losing weight long term ?

Obviously losing weight has its overall health benefits, but the way I’m reading into to this latest information, and I maybe reading it wrong, its the sudden intermittent drop in calories (fasting) that seems to have its benefits in regards to MS.

I clearly recall the day my neuro told me I had MS, amongst all the mind boggling info that he threw towards me, there were 2 things that he said that have stuck in my mind, firstly get onto D3 straight away, and also swap to a low calorie Mediterranean type diet.

The first was easy, pills out of a packet, but swapping to a low calorie diet is and has been a challenge.

I think I’m right in saying that dieting is not the same as intermittent fasting.

Like I say, I might be reading into this new information wrong ?

I think you are right - this link lists some interesting benefits of intermittent fasting:

https://www.healthline.com/nutrition/10-health-benefits-of-intermittent-fasting

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I’m just wondering why the article says the medication is for people with RRMS but not for those with PPMS. If indeed the drug does repair the myelin, that surely that’s the basis for all types of MS.

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Good point !

That is a very good link

The frustration, as always, is getting on to these trials. My wife has tried so many times over the years to get on to various trials and has never been successful. For drugs like these, that are relatively inexpensive, we’d happily pay ourselves. 7 years is a very long time away with this illness … for some, quite literally a lifetime! Will be following the progress of these trials very closely.

Im currently on the latest part of the Simvastatin trial, apparently its still openly looking for more to join.

Hi Jactac. She did apply for this trial previously but heard nothing back. At that time she had some mobility; if they were to contact her now she would not be allowed to take part as she’s lost the ability to stand, let alone walk. and so she no longer meets the mobility criteria (to walk the length of a bus).

This is one of the frustrations with these trials; for those who are very ill they are not allowed to join in and are having to face the awful future knowing that any new drugs will be too late for them.

Really hope the trial is going well for you Be interested to hear if you are seeing any positive results.

Hi Freddy,

Theres a broad variety of mobility issues with the participants who are on the same study as myself.

Anything from very good mobility to people in wheel chairs.

Theres one chap who actually more or less runs when doing his monthly distance walk test, the nurse has trouble keeping up with him.

Then on the total opposite end theres a chap, who I’ve become friendly with that has constant use of a wheel chair.

The idea of the study is to see if this drug slows down current progression, no matter what level you are at currently.

I would speak to your consultant again.

We have gone back onto the registration site but it rejected us based on mobility.

Our MS nurse is visiting tomorrow and we have a neurologist appointment later this month, so we’ll raise this again but I’m not hopeful. In fact, this is our first neurologist meeting in 3 years as the last one discharged us as she said ā€œthere is nothing more I can do for youā€ **. Our GP though, who has been great, has finally got us into another hospital so hopefully we’ll have more joy this time.

** friends of ours have had exactly the same from her neurologist but a different hospital. Seems they are only interested in illnesses where they can get someone better, but they don’t want to be involved with those patients who are always only going to get worse. Anyone else experience this?

My neurologist suggested I try Simvastatin - not as part of the trial, but just as an ā€˜off label’ prescription. It has been shown to improve cognitive impairment in many people with MS. Unfortunately, it made my legs weaker so I stopped it. But you could ask your neurologist when you see him/her.

Sue

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The Barts Blog is worth reading for anyone interested in the Simvastatin trial. MS-STAT2 – Simvastatin for Secondary Progressive MS – The MS-Blog

I have been on it for type 2 diabetes for perhaps 7 years. Not diagnosed ms but not had a major issue since 2013/14