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  #21  
Old 10-24-2015, 07:07 PM
Veronica Veronica is offline
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Location: Columbia County, NY
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Hi Teena Marie: Well, I haven't completed my first week yet,( that will be Monday evening...) but no ill effects at all... I've gotten used to the dosing with the powder but will be getting capsules and the filler Geegaw ( they call it a machine, but it is really just a holder for the bottom of the capsules...) I need it for my afternoon dose if I am not able to get to a private place to weigh out the biotin... my work has me often at different locations during a given day with limited privacy.
I haven't seen/ felt any difference yet that I can atribute to the biotin...but my doc said to give it a month, so I still have just about three weeks to go. Good timing with my next PT session as Herb will be able to give me a realistic assessment. Wishful thinking can be very powerful, and maybe abit misleading! All my regular stretches and exercises are staying the same so I can really judge if I feel a difference. Got my fingers crossed. I'll keep reporting....
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  #22  
Old 10-24-2015, 08:02 PM
AMFADVENTURES AMFADVENTURES is offline
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TM, V you're right, biotin looks promising. Just back from my yearly pilgrimage to the state of the union speeches on MS in my area where biotin got a favorable moment or two, although without significant confirmation (but why would there be, it's cheap). Still, I'm interested in trying it. I'll talk to my neuro next time I get a chance but may add it to a short list of supplements, until then anyway. Apparently there's no downside. V, thanks for the web site, but can't help but wonder if the product is genuine?

L
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  #23  
Old 10-25-2015, 12:07 PM
teena marie teena marie is offline
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The person to whom I spoke started feeling improvements at 2 weeks. He is also using a scale and measuring spoon.

How do you find the facebook group? I just tried joining but seems I am restricted for 12 hours.

I'm trying to contact my neuro but I suspect he won't go for it since he doesn't like to prescribe off label.
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  #24  
Old 10-25-2015, 07:00 PM
Veronica Veronica is offline
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Your concerns, Larry about the purity/genuine quality of the biotin is something I also thought alot about...Just know that I can't afford the compounding pharmacy route, even if I get them to lower the price, so I figured I would take the chance. I am trying to find a way to verify the purity of what I have.....

Teena Marie...nice to hear that someone is seeing improvements in such a short period of time, and with the bulk stuff... I don't know what the issue is with you joining the facebook group, I hit "Join" and shortly after I got an acceptance. I saw that someone had posted that a friend of theirs had a problem, so they gave the full name and asked the administrator to add them and it was done. If you want, private message me here with your facebook info, and I will try to get word to them to accept you....
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  #25  
Old 10-25-2015, 08:21 PM
teena marie teena marie is offline
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All resolved.

Many thanks.

Teena Marie
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  #26  
Old 10-28-2015, 10:31 AM
AMFADVENTURES AMFADVENTURES is offline
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V, TM, I found this, the U. S. Pharmacopeial Convention does verify ingredients and strength of supplements that suscribe to their service. Although I imagine labels can be falsified, it might be worth looking for. This is the Web address, information and seal of approval to look for.
http://www.usp.org/usp-verification-...ry-supplements
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  #27  
Old 10-28-2015, 07:13 PM
teena marie teena marie is offline
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Thanks for this, Larry. I'm still trying to contact my neurologist. There is a compounding pharmacy here in Montreal I will hopefully use with a prescription.
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  #28  
Old 10-29-2015, 07:58 AM
Veronica Veronica is offline
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Yes, thanks for this Larry. My biotin powder has a "Manufactured to GMP Standards" mark on it, but I can't figure out if this is for purity of product. Gonna call the compounding pharmacy near my and price out the caps, but may also pick his brain about how to check on purity. In the meantime, I am just continuing the 100 mg 3x daily.....
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  #29  
Old 11-16-2015, 11:12 PM
Veronica Veronica is offline
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Ok, so it has been one month today since I started the Biotin. It's been easy to dose....decided against the compounding pharmacy due to cost.

I VERY CAUTIOUSLY am reporting some improvements here. It is, as I was told it would be, very subtle, but I think it is real and not wishful thinking.
While I do not have the type of MS fatigue that others have, I do end up with motor fatigue when I "use up" my leg, and then overuse my stronger muscles and body parts to get me thru the day which result in my being very physically fatigued at the end of the day. I have had much fewer days of this, and have not reduced my daytime activity. I see it in side stepping in my kitchen making dinner.My hip doesn't collapse/drop as it always did......I stepped up on my tredmill leading with my weaker leg the other day without even thinking that I usually can't do that.

Walking in general just seems more comfortable, more fluid, with much more heal strikes first and fewer plopping of the right foot ( if you know what I mean....)

Now, my balance tests that I do most evenings do not show any difference.....and my distance in walking is no different....just more comfortable until the leg fatigues out. I shouldn't say "Just" because it really has me happy. Stairs are still difficult, but on Saturday evening I was at a concert at a small landmark theater (aka OLD). The bathrooms were down a steep flight of stairs, and then our seats were in the balcony....two steep flights up. My form was still stinky in doing all these stairs, but it did not "use up" all my motor strength, and I easily was able to walk ( and talk) the block back to the car after the show. A nice feeling and not one that I have had in quite a long time. In general I feel I have more sustained energy.

I see my PT on Friday and I know that he will be able to give me an unbiased assessment. I'll let you all know!
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  #30  
Old 11-18-2015, 10:38 AM
teena marie teena marie is offline
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Wow, sounds impressive, encouraging. My neurologist just gave me a script. He wants to go slowly so it will take a while before I'm at full dose. Started today at 20mg twice daily. I'm keeping my expectations in check since it will be 3 months before I'm at 300mg daily.

Continue to keep us posted.

Teena Marie
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