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Biotin for Progressive MS

Keep seeing this on facebook, just wanted to know if anybody has tried it, and how they feel ?

Hi

I’ve just started taking it. Far too early to notice any changes but no adverse side effects. Some people on Facebook have reported immediate positive changes but in the research it normally took about 9 months. You could join the Biotin group on Facebook for more info about ordering Biotin (if you want to try it…for me it’s working out at about £2 per day) and what others have experienced when taking it

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Hi. I’ve been taking biotin for 2 weeks. Haven’t had any side effects but no change as yet in symptoms. But as wilxs said,I believe it takes a few months to work. I just thought I had nothing to loose . It’s water soluble so difficult to over do it. The research dose is 300 mg daily.

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Sorry…I think it works out at about £1.50 a day…dodgy maths by me!

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I started it yesterday, obviously nothing to note as yet.

Found it impossible to make little rice paper parcels with my awkward fingers so I am dissolving the days dosage in water and am sipping it throughout the day.

Mentioned it to my GP yesterday and he is very keen for his other progressive patients to try it…so much so that he’s telephoning them with the information.

Nina

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l bought 100g of pure biotin from Bulk Supplements and it cost me - with shipping £120/$189 for 333 days.

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Nina - l use the rice paper - but l just put the piece, with the biotin, on it straight into my mouth. lt is too brittle to fold. But it does just dissolve in the mouth.

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Thanks space jacket…I’d read about people making little parcels and keeping them in the fridge. I tried every which way but mostly sent the powder flying across the room because my hands jerked.

In the spirit of waste not want not I decided at that point to try the water…seems fine but I did wonder if it might be less effective that way?

I even wondered about tipping it straight from the scales directly into my mouth…it’s tastes of almost nothing…in water it reminds me vaguely of a very very weak beechams powder.

thanks,

Nina

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Up till now - l have been putting it onto the rice paper to weigh - and putting straight into my mouth. Also, to keep my ‘stash’ OK -l put a small amount in a pill pot - empty LDN pot - this way l can keep the rest safe in the fridge. And you are not opening and closing the bag all the time. Thought it would keep it better.

l do the measuring in my bedroom - have the scales and rice paper ready on the window sill - this morning l had the window open and a breeze blew the powder everywhere. lt is so light.

Look up medwireNews-General Neurology-Biotin benefits ‘clinically relevant’ in progressive multiple sclerosis …

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My scales have a tweeny dish on them with little lip to pour the powder so I tip it straight from that into a small glass of water and just take sips throughout the day…it does need stirring each time as some of the powder settles.

My biotin arrived in a dark coloured bottle…it doesn’t mention keeping it in the fridge…just says a dark dry place. I keep mine in the kitchen…I have to have been up a couple of hours before I take it as I’m too wobbly to even try doing it when I first get up.

Thanks for the link.

Nina

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I’m new to this so please bear with me. My nephew has the most aggressive form of MS. I did not realise how bad it was as I am aware of some people who have had MS for years and they seem to be “coping well with life.” I only now know everyone is different. I have realised how ignorant I am of this condition. My nephew moved up north to be nearer his family and I was shocked by his condition. He is nearly 36 yrs of age and has always been a very fit young man, in fact he spent most of his adult years serving in the armed forced. It was when he failed one of his medicals that his condition was discovered through various tests. He has deteriorated so much over the years I find it quite shocking. He was admitted to hospital, critical care unit, with what they think is a severe chest infection and all the family were told to come in, we were told it was very much touch and go. He has been in for three days now and they have managed to stabelise him and he seems to be improving. I cant believe how bad he is. He shakes, is in pain, has no toilet control and cant swallow and I just feel so helpless. He has a young family and his partner is finding it very hard to cope. What help or suggestions can anyone give me to make life better for them. Unfortunately I work full time so Im not always available to help out but I am willing to do anything I can to try and help.

Aunty Ann I’m so sorry to hear about your nephew, what a shock it must be. Something which may make things seem worse at the moment will be the presence of an infection. They can knock many of us off our feet, and his is obviously very severe. I’m in no way Trying to tell you that he’ll be perfectly well once this has been successfully treated, but he will probably be more settled than he currently is.

Although there is no treatment for progressive ms there are many drugs that can be given for specific symptoms eg pain, but if you’ve ever had a bad infection you’ll know how painful all your joints etc become, well our bodies often exaggerate those symptoms making them excruciating. They will be giving him something for it but nerve pain in particular is notoriously difficult to get under control.

I hope once the antibiotics kick in, which could be anything from 3-7 days he will be more stable but if we can offer any support we will try. You’ll get more response if you go to the top of the list of topics and click on “New thread” as many of us don’t always read posts on all current topics. There are some good people here who are friendly and supportive and have a lot of experience which may help you, but also your nephew and his partner.

Take care

Cath x

You did well Spacejacket. I ordered 50g from Bulk Supplements on 19/6 ( they didn’t have 100g in stock)'and it cost me £105. I know things are often cheaper if you order larger amounts but not that much. Hope they’re not hiking up their prices with all the interest from our Facebook group!