That’s reminded me, I meant to ask about statins! That’ll just have to go on the list now
Everything has gone a bit mad to be honest - I hope to be 100% certain about this trial at any moment but along the way I cut out everything, I only take a general 1,000 units of vitD now and painkillers/Baclofen etc. I even dropped the LDN.
Good to know things are the move tho.
Sonia x
Moyna,
l receive an email for BioNews - MS Weekly News - and l have been reading about the Biotin trials on this. lf you can’t find the link to BioNews - just message me your email [ only if appropriate] and l will forward it to you.
Is the news anything good?
Hopefull.
An you send me the link please
Results are in, good news
Sonia x
Sonia, lf all goes well with Biotin - we could all be signing up for ‘pole-dancing lessons’ - we could form a syncronised group!!
Just looking at my Biotin pot - 120 tabs - so 30 a day it would last me 4days. l presume you only need take them until they have done their job. lts not a ‘for life’ med.
So what l take must be helping in a small way. Don’t throw away all of those ‘killer heels’ yet. We could be back to wearing them. Would love to stop having to wear these ‘orthopaedic’ style footwear.
apparently it will be a long term one
Yes, I think you’re right. There are comments from researchers on the Barts & The London blog about that too. Looking forward to the full story next Friday, keeping everything crossed.
Hi everyone - hope this is OK to post. Someone recommended I post here. I’m in the US and my spouse has SPMS. He’s trying high dose biotin to see if it helps. We set up a Facebook Group for people who might want to discuss their experiences on it with others worldwide. If you’re interested, it’s Biotin for Progressive MS | Facebook
New fb page biotin for progressive ms just started thought it might interest you xx
l have joined this facebook page - Biotin for Progressive MS - so thanks for the info. Exciting times we hope - the results of a trial is 5pm GMT tomorrow. US is midday.
Many people taking the higher dose Biotin. One point someone made is always take with a meal as it can cause nausea on a empty stomach.
I’ve been taking 50mg then 80mg now up to 120mg Can’t say I notice anything different, things have gotten a little worse today with my legs but then I’ve done 2-3 mile a day the past week Fatigue doesn’t seem to be an issue now and neither does heat intolerance so you never know!
Please - all of you join the facebook Biotin for Progressive MS - its all kicking off - lots of lovely people all waiting for the results this afternoon of the trial.
Most of them already taking Biotin.
You must take it with a meal - otherwise it will cause nausea.
This group is fantastic Fleur - and many of us will be with you all the way. Can’t wait for the results to-day.
Love to you both.
Frances.
What is everyone saying on there?
im worried the trial won’t be THAT good, but fingers crossed
has anyone on there had any success? I’ve found my head is itching loads, apparently it happens to people taking normal doses for hair growth so at 120mg as opposed to 5mg you would expect something
Do make sure that the Biotin you are using does NOT contain calcium - as at a high dose it could be dangerous. l have found lnnopure Biotin 10.000mcg 120 capsules Amazon.
l have also contacted Bulk Powders Ltd UK - and asked them to source pure Biotin for us -explaining that there will be thousands of MS sufferers interested - and it needs to be at a price affordable to us. We could be waiting years for the NHS to get involved. Also, on the facebook page Biotin for Progressive MS - l have suggested that they form a non-profit company and source their own Biotin - as there will be so many of us.
Had two replies from Bulk ~Powders - they are doing their best and acting as quick as possible. They do seem very interested - l did tell them it could be a ‘win win’ situation. Other people have also contacted them - not just me.
Biotin powder is used for horses - it improves the condition of the hooves. 2kg tub for £15 from Amazon. l have some in my tack room - we must have bought it as a hoof conditioner. As an ‘old nag’ l might start taking it. My nails have been growing at such a rate since taking biotin. The half moons on my thumb nails are half way up the nail. So what else is it doing.
Do make sure you eat when taking it - no sickly feeling then.
KrisP Do join the facebook page Biotin for Progressive MS - its Global - you will enjoy ‘meeting’ all these wonderful folk.