With the news about 'biotin' for progressive MS coming out, recently, I hope that it is really a positive report from the AAN's annual meeting. Does anyone take this supplement, regularly? What amounts? How often? In what dosages do you take? Does the supplement give you any side effects? I have to investigate the RDA, but I will not take 'mega' doses unless I clear it with my doctor. Any ideas?
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Does anyone use Biotin?
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I am not using it, but I am rather interested in it. I will be watching this closely.hunterd/HuntOP/Dave
volunteer
MS World
hunterd@msworld.org
PPMS DX 2001
"ADAPT AND OVERCOME" - MY COUSIN
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I hope you get some responses from people who do, Jerry. I have to say, I'm sorely tempted to give it a try, although to approximate the doses they used in that trial, you'd have to take a lot, and from the time frame they gave, you'd have to keep with it for at least nine months.
I look at it this way: although I have never been able to get a firm number from anyone, with PPMS, as best as I can tell, I have about a 1 in 3 chance of becoming completely disabled. And by that, I mean bedridden, having to be fed, washed, etc. Maybe the odds are even higher, but I don't know because nobody will tell me. But if I get to that point, I don't think I want to stick around for too long, yanno? So in that trial, they had what, 23 test subjects, and two died, not necessarily from anything to do with the biotin? But let's just say that somehow the deaths were connected, then doing the math, and rounding up, you get a 1 in 10 chance. Which odds sound better to you?
I know that probability and statistics are way more complicated than that, and there were far too few test subjects, but it sure has me thinking a lot about it. Like you, this news has really grabbed my attention. And try as I may to put the brakes on it, I'm allowing hope to creep back into my outlook.PPMS
Dx 07/13
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I've been taking 10,000mcg in a hair, skin and nails complex. Has other essential things in it also. Only notice my hair doesn't break as easy and is thicker...nails, also. Skin...results---questionable.
Why are you taking biotin? Should there be some other issue it helps? thanks for any answers. fed
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I am PPMS and take a small amount of Biotin in my B-Complex vitamin and multi-vitamin. I have read the results of the trial and the subjects were taking an extremely high daily dosage of Biotin. It was 300mg a day and this was a highly concentrated pharmaceutical grade. So I would imagine that the stuff you purchase in a supplement form is not going to come close to what they used in the study as they tend to contain lots of "fillers" as well. I also found this study to be encouraging.\ in that 12.6% of the patients taking MD1003 (Biotin) did show improvements in EDSS and the timed 25 foot walk. Not as much as the initial non controlled trial where they saw a 90 plus percent improvement in a smaller pool of subjects...but any improvement is better than nothing. Also the 67% risk of disease progression was encouraging.
So I guess I may up my dose of Biotin based on the study and the safety profile. However, I am not getting my hopes up too much in that I am likely not taking a strong enough version or enough in general to make a difference. I have a 6 month neuro appt. on Monday and will get his feedback on this as well.
Also for any of you that are interested, there is a FB page out there where they are discussing this very subject....Biotin for Progressive MS.
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Hello Fed,
I have been intrigued by the Biotin news recently. I was curious if other MSers were taking the supplement. I want to know if other MSers have found any benefit and, if so, what kind of changes. I am taking 10,000 mcg daily. I have only taken 3 days worth. As long as I don't experience negative side effects, I will continue to take it. Thanks for responding. Good luck.
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pp, rr, sp????
diagnosed last summer, 56 yr old, seeing ms neurologist in May, I have not started any DMD's, still working (barely). fatigue, stumbling brain, and more recently (last 6 weeks or so) pain in right arm and hip/leg stiffness which is painful. at this point I don't think that I have experienced a true remission....in 9 months. which makes me think this is not the relapsing remitting type. how do docs determine?? is there a test or is it simply seeing progression in symptoms? I had O bands on LP, lesions on cervical spine and brain when tested last summer. Should I request (or can I request) a new set of MRI's before appointment. I really do not want to treat RRMS if that is not what I have. Never have had steroids. take Provigil for fatigue, Vitamin D supplements and have made great strides in reducing work stress. Still feel crappy most days. Bummed.
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Hi Jerry
I wanted you to know which I didn't write in my last post is that I take the 10,000 1x per day. Now the neuro is still iffy if I'm spms. I'm wondering if it's only for progressive ms AND if the drs. are writing prescriptions??? I just get mine in the vitamin section at Walmart. According to reviews, Spring Valley was the preferred brand. I get 120 gel-caps for $7.00. It also helped my B levels. I was at 367 and my last test results was 595. And as I said in my previous post it's helped my hair growth. I also like the fact they're small and not difficult to swallow. Sorry if I'm being repetitive.
My best.....
Diamond
Diagnosed 6-28-14
RRMS
Alone we can do so little; together we can do so much. ~Helen Keller~
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Originally posted by frosty123 View Postdiagnosed last summer, 56 yr old, seeing ms neurologist in May, I have not started any DMD's, still working (barely). fatigue, stumbling brain, and more recently (last 6 weeks or so) pain in right arm and hip/leg stiffness which is painful. at this point I don't think that I have experienced a true remission....in 9 months. which makes me think this is not the relapsing remitting type. how do docs determine?? is there a test or is it simply seeing progression in symptoms? I had O bands on LP, lesions on cervical spine and brain when tested last summer. Should I request (or can I request) a new set of MRI's before appointment. I really do not want to treat RRMS if that is not what I have. Never have had steroids. take Provigil for fatigue, Vitamin D supplements and have made great strides in reducing work stress. Still feel crappy most days. Bummed.
I started a new thread for you, where hopefully, you'll receive more replies. http://www.msworld.org/forum/showthr...36826-pp-rr-spKimba
“When you change the way you look at things, the things you look at change.” ― Max Planck
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