Just want to agree with Anon’s post about supplements. Be careful.
Any peculiar symptoms, stop taking the supplement.
Vitamin K thins the blood & you should really speak to your GP before taking it.
I speak from experience. I ended up in A&E with a skipping, irregular heartbeat. The cause was a magnesium supplement I had bought ‘over the counter’.
The A&E doctor said to me that many supplements can cause all sorts of problems… & especially when your body is compromised by chronic illness like MS.
I seem to find just 1mg per day of d-biotin very beneficial for my fatigue. I won’t be taking any more than that until they find out whether biotin results in remyelination.
Someone on the facebook group - Biotin for Progressive MS - has already found a pharmacist who is hoping to help us with getting the right grade of pure biotin. Looks as if it will be very affordable - So brilliant news for us.
I’ve ordered some d niotin which is the active type by all acclujts
ive also spoken to one of the owners of the company at medday about it,'I asked if he thought it was a symptom treatment drug or disease modifier remyelination drug and he thinks it’s a disease modifier.
this might be becaue he can charge more for it but I genuinley believe that’s not the case, they also have an optic neuritis trial going on which is an ambitious trial that will sort out whther its symptom or disease modifier
i don’t think they would do that trial unless they had some level of confidence
joyj, l have read the thread on Biotin that you posted. Why have we not heard about it before now. Looks as if it cures everything. The group Biotin for Progressive MS - are looking into getting the right type and purity to be able to distribute at a non-profit price to MS ers at about £15 a month or less. They are working as fast as they can - before the pharmacutical companies try to get a monopoly of it.
l will keep this thread updated in case any of you have not joined the group.
Just hope that l do not start growing a beard after taking all this Biotin. l have a thick curly mop of blonde [well ash-grey] hair as it is.
I am reading the thread every day with interest…I hope you keep posting information…I don’t use Facebook but I’m keen to read all the updates. I haven’t tried biotin yet, I’ve recently had a big change in medication so I’m waiting for my body to get used to the changes before I think of trying something new. Sounds very exciting though.
I’ve joined the facebook group too, handy to keeps tabs on development
KrisP - next time you have a blood test, please ask your GP to check your Vit D levels. Too much can be bad if your levels are ok anyway. I got mine checked after about 6 months of 2,000 units a day and it was too high so had to cut back to one tablet a day. Like Pat says, these supplements can come with problems.
Do you think buying tablets from the web such as Amazon is ok? With regards to quality and control. I know there are only a few choices. I would be more comfortable with buying from Boots from example.
Lenney I think lots of us on here buy Vit D3 from Amazon. Check out the customer reviews and only buy those that have lots of reviews and lots of good ones. Also make sure they’re being sent from a seller in the UK.
But as I said in earlier post, supplements can cause problems so you have to be careful. The magnesium supplement that I took and ended up in A&E was from Holland & Barratt! But they probably wouldn’t cause any problems for thousands of people. We are all different and our bodies will all react differently to different supplements. So take care. Any weird symptoms, stop taking them, and start on small doses.
After taking the over the counter Biotin- B7 for 4 weeks with surprising results - l decided to take the plunge and buy the pure powder from Bulk Powders US. lt has arrived - and l shall be starting it. l have bought some micro scales so that l can weigh the minute amount. lt has cost me £120 for 333 days supply. And l am going to take B1 - Thiamine with it also - another B vitamin that we with MS need plenty of.
As these vitamins are all water-soluble - and non-toxic - it is safe to take this amount as any not absorbed will just be passed out via kidneys.
Another helpful piece of info l have received is about Borax/Boron for Arthritis/OsteoArthritis/Candida the link is
Thanks Spacejacket, I too am better on the biotin. I did have to stop for a week as needed to get thyroid bloods checked. The biotin prevents to test from working in my case. My thyriod levels were fine in the end so I am bacl on the biotin.
One thing I have notice is that the urge to move my bowels has come back after 2 years. My energy levels are better and my dodgy leg feels stronger although foot drop is still there.
I will get that biotin from bulk powders when my supply runs out. I have however got the d-biotin in capsule form but I think the powder will be cheaper.