joyj, l do hope you will soon see some improvement in your mobility. You were very brave to try Fampyra. Especially when it had 5 yrs trial. And appeared to be fairly successful. Then we started hearing about folks health /mobility getting worse.
l was interested - but the cost prohibited me. Now the unfortunate outcome of so many had certainly put me off.
The Biotin theory for people with PPMS/SPMS has intrigued me - and l am taking the high dose of Biotin which l am getting from amazon. l joined the facebook group Biotin for Progressive MS. Good crowd - all doing their own research and making their decisions. Several members are trying to get a pure source of Biotin Powder - at a price reasonable for everyone to buy Hopefully a non-profit making scheme. So far it looks like £15 a month.
Many of us are already taking it - and have already noticed - 4 weeks in - that our energy levels are up and strength/mobility has improved. Whether it is all in the mind- how many times have we heard that - l do not know. But l have started walking a few steps without my rollator - whoopee - and can lift my left knee right up - this l have not done for years. Oh, and l can stand on one leg for a few seconds. Small steps - but forward steps.
This is the best news for PP/SP ms’ers. And l cannot see why it would not work for all types of MS.
So a lot going on right now. We have found out the type of Biotin used on the trial - so sourcing one that does not have the usual fillers and added calcium is the aim. How to make the powder into tablets is another. ln powder form it is hard to measure such a small amount correctly. l have even ordered some micro scales and callibrating weights. Like going back to school.
l have not told friends/family about my own Biotin trial - l am waiting for someone to notice that l am doing things l could not do a couple of weeks ago. My skin/nails/hair already looks much healthier. But as l am taking 30 times the RDA suggested on the pill pots for normal use l am expecting those sort of improvements. Biotin is used for hair regrowth - just hoping l do not become the ‘bearded lady’. But if l can only be a bit safer on my legs - and better balanced - the beard can stay. l will be able to sing at next years Eurovision!!!
The Biotin available that does not have calcium as a filler is Healthy Origins/MSM/ Swansons. And l take 10.000mcg x 30 a day. With a meal - as it can make you feel a bit sicky on a empty tum.
l find myself looking for things to do now - more enthusiasm. Can’t be bad.