On the facebook group for Biotin for Progressive MS - now 600 members and rising. l have learnt from so many other people.
Thiamine B1 vit is recommended to take with the Biotin - as in the trial. But l learnt more about Thiamine- which is beneficial to all for fatigue. 1500mg is recommended daily. So worth getting the pure powder to avoid all the fillers in the over the counter vits. They have too much calcium/magnesium to take in a high dose.
I’ve been reading your posts and you guys seem on the ball as far a what to do to help yourselves stay the best you can. I had my second neurology visit on Saturday . The neurologist ,although he can’t be100% positive believes it is ppms. I think due to it’s onset and my age (48). I have now known about it for 6weeks and although not really coming to terms with it, I am a wee bit more positive in my outlook after this’s visit ass I had myself written off within weeks. The problem is he said at the moment there is no treatment an only suggested vitD. Should I be taking this and anything else and at what’ doses ass my gp was clueless …
With MS - we all seem to need lots of B Vitamins. Especially, B12. Just google vitamin b 12 deficiency MS and do the same with vitamin d3 deficiency MS. l read all l can about these vits and minerals.
l had my vitd3 levels checked by CityAssaysLab B/ham. lt is a very comprehensive postal service - just a pin-prick blood spot test - they email you the results. ldeally, are levels should be 150/225 nmols.0121-507-4278 £28, Mine were 8 when l was first tested. l have taken a high dose vitd3 for about 8yrs. Started at 20.000ius for nearly two years - now on 10.000ius daily. Still my level is only 98nmols. AND l spend a lot of time outdoors - hoping to soak up the natural d3.
l take B12 - 5000mcg methylcobalamin daily. Little tablets that dissolve in the mouth. Supposed to get into the bloodstream quicker.
And l take B1 and B7. Thiamine and Biotin. With the B Vits - no worry about overdosing as you just pee out what is not absorbed.
They are water-soluble.
LDN is another l take - Look up all you can on it. lt is no cure - but certainly makes you feel more positive and in charge of your life as it boost your endorphins.
Yet to meet a neuro who knows anything about MS - sad l know - but that’s the way it is - and l have had SPMS for 30+yrs. And in that time have tried many prescribed meds to help with symptoms - and they all made me feel worse - and l did give them all a good chance.
Thank you for the information. It is very much appreciated, Spacejacket. Do you think I should start biotin now. My symptoms at the moment are very mild. The most annoying being twitchy leg muscles and right foot drop after a couple of miles. I’m worried about how fasts it will progress. Was first aware of the foot problem about 3/4 years ago but it was very intermittent andd only after a 6 mile walk up until about September 14. Do I wait and see or start now ?
Well as the Biotin can only do good - no harm. Then l would not hesitate in your circumstance. The earlier the better . l am not expecting too much as l have had MS for 33yrs now - and had foot drop all that time - one of the first symptoms. And l have noticed, that it is not nearly so bad, most of the time since starting Biotin and Thiamine.
You’ve nothing to lose - and lots to gain.
Do make sure you also take B12 - just look at B12 Deficiency MS.
Thanks again for your quick response. Was reading up on ms so much and reading a lot of conflicting info. Thought it best to get it from those who know.
Dewdrop, I take LDN and whilst there’s no guarantee there is a line of thought that suggests it could just possibly slow progression, as I said no guarantee but in my opinion if there’s the slightest possibility then it’s worth a try. I recently had to stop LDN in order to take a new pain drug that clashed with it. It wasn’t long before I stopped the new medication, even though it was helping the pain, and went back to LDN, having taken LDN for a while I’d forgotten just how much it helped me.
Dx 2014 age 53. Have never shown any signs or symptoms of anything in the past and rarely visited gp’s
Always been active and fit (running, gym gardening). Symptoms started in 2012 with slight tingle on the toes and right hand followed by a weak right leg after a 3 mile walk… Walk has now reduced to about a mile before leg gets weak although balance is mildly touch and go from onset!! So this has been a complete nightmare and one which I frequently wake from only to realise it’s real!!!
Now on the hunt like many to speak a cure to this dreadful disease!
So… I Immediately cut out dairy, sugars, reduced meat, made leafy smoothies etc etc! Then took a trip to the local health food shop in the hope that…!
I read with great interest the trials regarding Biotin and would like to give it a try but does anyone know where it can be purchased at the 100mg dose? Holland and Barrett only have it at 1000ug
The over the counter meds all have fillers - so you end up with too much magnesium and calcium. To get the pure pharma grade powder you need to order it from Bulk Powders US - 100g is £120 for 333+days worth if you take the high dose used in the trials of 0.10g x 3 times daily.
You can also get pure thiamine from them as well. lf they are out of stock - it can also be ordered from Pure Bulk US.
lt is classed as a food supplement not a ‘drug’. l had to buy - from amazon - a set of micro scales to weigh it on - as it is a tiny amount. Smart Weigh.
l was not expecting too much - but after having PPMS for 33yrs - l have noticed some good improvements. So l am very pleased with it all.