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  #41  
Old 10-22-2016, 04:20 PM
Veronica Veronica is offline
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Suebee, I was dx'ed with hypothyroidism several years before the MS dx....didn't have any symptoms..it was just picked up on blood work. It's been such a benign thing with me, never felt any change when I started meds as I never felt any problem. So I just pop my pill every AM and that is that.... I have no idea if it is immune related....
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  #42  
Old 10-22-2016, 08:50 PM
Suebee Suebee is offline
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Veronica, Glad your thyroid is easily managed! There is a strong connection between thyroid issues and MS but its my understanding that is a much as medical science currently knows...

"Hashimoto's disease, Graves' disease and multiple sclerosis are autoimmune disorders that may share similar mechanisms for the pathogenesis of the dysregulation of their self immunity. This study has shown that there is a significant co-occurrence in patients with MS and Graves' disease, and a marginal co-occurrence in patients with MS and HT disease"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1308850/

Thanks again for the info!
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  #43  
Old 10-31-2016, 01:52 PM
AMFADVENTURES AMFADVENTURES is offline
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Default Biotin Factoid

An interesting factoid about biotin. Biotin, vitamin H, is required in a couple of steps involved in the Krebs Cycle. The Krebs Cycle is a series of chemical reactions at the cellular level which results in the aerobic production of adenosine triphosphate or ATP, and other biproducts. ATP is the molecule directly responsible for cell function, causing cells to energise or activate, ie. a muscle cell to contract or a neuron to transmit, etc. An increased level of biotin can cause in an increase in ATP production which could result in better neural transmission even in demylinated neurons.

From the Fall MS Summit compliments of The Rocky Mountain MS Center.

Last edited by AMFADVENTURES; 10-31-2016 at 03:03 PM.
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  #44  
Old 06-21-2017, 01:15 PM
Suebee Suebee is offline
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Default Biotin Trial Recruiting Now!

Hi, I came across the recruitment info for the latest Biotin Trial info on Nat'l MS website.

Here is description:


Eligibility and Details: Participants are aged 18-65 years old with a diagnosis of primary or secondary progressive MS. Participants can remain on existing disease-modifying treatments, if treatment has been stable for at least 90 days prior to enrollment. Further criteria are available from the contact below.

Participants are being randomly assigned to receive a capsule of MD1003 100 mg or a placebo capsule three times daily for 15 months. When all study participants have completed 15 months of double-blind therapy, all patient may enter an open label extension where all participants will receive MD1003 100 mg three times daily for 12 months.


The primary outcome being measured is the proportion of participants who improve on either the EDSS scale that measures disability or a test that measures mobility. Other outcomes being measured include cognitive function, quality of life, and activity on MRI scans.

Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please visit www.spi2study.com or call Dr. Robert Lasser at 617-378-8701.
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  #45  
Old 08-11-2017, 11:57 AM
Veronica Veronica is offline
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"You are actually better"..... I heard this from my neurologist yesterday....!!!! Really.....

I've been on the 100 mg/3x daily for just about two years now. I had been feeling just generally stronger for this past spring/summer ( apart from heat/humidity crap). My right leg (the weaker one)...especially the ankle and foot just seemed to last longer when I worked it. And around May, during a PT session, my therapist said my ankle flexion was better than he had seen it before.

But NEVER has my neuro made such a comment. He said he saw this in all the tests he did on my leg strength and ankle flexion. Said I was much stronger on those when he wanted me to resist his pull, and I even knew it when he asked me to go up on the balls of my feet. I knew that my connection was there to really DO this, and walk a few steps on the balls. And as soon as I did it, he made his comment " You are actually better..."..... better than when I saw him six months ago.

I just about floated on my 115 mile drive home. It really was the shortest ride!

We feel it is a result of a combination of Biotin, probably my walking barefoot more around the house, walking with weights of bags and pots of garden stuff, and the years of doing my MS exercises.

But Biotin probably is the main factor here. He also said that they have seen that the vast majority of people have NOT had the results that the researchers had hoped for, but that obviously I have had those results. Wow.... just wow.... That's all the motivation I need!
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  #46  
Old 08-11-2017, 09:31 PM
Suebee Suebee is offline
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Fantastic Vernonica! That is great! I went to pharmacy and bought biotin bottle today. Do you know if there is a difference in brands or quality? I bought nature made 5000 mcg soft gels to try it. Thanks for posting update. Suebee
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  #47  
Old 08-12-2017, 07:03 PM
Suebee Suebee is offline
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Yes, I know I would need to consume the entire $14 bottle of biotin to take one day of 100 mg 3x. sigh. I'm not in the study. I dont buy in bulk yet. and It was on sale.... I figured It could be a warm up. a little hope in a jar.
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  #48  
Old 08-13-2017, 11:10 AM
teena marie teena marie is offline
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Amazing news, Veronica!
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  #49  
Old 08-22-2017, 03:42 PM
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ActiveMSers ActiveMSers is offline
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I'm on 100mg, 3x a day for my trial. Haven't noticed anything major, but I may be on the placebo. That said, I'm waking up way early (4-5 am) and get the occasional headache. I never get headaches.

Of course, I did just set a distance PR on my trike (21 mi.) so you never know....
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