MS Research from Caltech!

Here’s an interesting article I ran across from Caltech a couple of years ago. Has anyone heard anything else about this research? Any updates?

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Of Bugs & Brains: Caltech Researchers Discover that Gut Bacteria Affect Multiple Sclerosis

PASADENA, Calif.—Biologists at the California Institute of Technology (Caltech) have demonstrated a connection between multiple sclerosis (MS)—an autoimmune disorder that affects the brain and spinal cord-and gut bacteria.

The work—led by Sarkis K. Mazmanian, an assistant professor of biology at Caltech, and postdoctoral scholar Yun Kyung Lee—was published July 26 in the early online edition of the Proceedings of the National Academy of Sciences.

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To read the rest of this article, CLICK HERE!

As always, I’d love to hear from you, especially if anyone has any comments about the research discussed in this article!

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MS Foundation E-Magazine – Awesome!

The MS Foundation in Fort Lauderdale, Florida, has a great online magazine called MS Focus. They publish a new magazine four times a year, and all the magazines are accessible from the same page!

YOU CAN READ THEM HERE

I especially love the first article about small changes leading to big improvement. It’s in the Winter 2013 Issue. I love the idea of baby steps, because they’re small, non-threatening steps you can actually take right now, and baby steps in sequence can still lead to something huge.

REMEMBER: You don’t have to figure out everything right now. You only need to know what you want to do NEXT!

So what’s your next baby step?

Genes and MS – 57 Puzzle Pieces!

This is so cool! Scientists with the Human Genome Project have identified 57 genes linked to MS! You can read the full article by clicking the link below:

CLICK HERE TO SEE WHAT CLINICAL IMMUNOLOGIST GRAEME STEWART HAS TO SAY

Yay for Science!

MS Adventures – Modafinil, Day Two – Holy Dry-Mouth, Batman!

Modafinil. Mo. Da. Fi. Nil. My new drug of choice.

Modafinil is a powerful stimulant, and since I’ve had dry-mouth since my first pill yesterday, I’m attempting a caffeine-free day, and just hoping the Modafinil will take it’s place. I’ll let you know how that goes.

I was concerned that the drug may interfere with my sleep patterns, especially since I took it after lunch when I had the prescription filled, but I slept just fine last night. I woke up at a normal time this morning, with no headaches, dizziness or agitation. I’ve been keeping a close eye out for the listed negative side effects, but so far (other than the dry-mouth) there’s been nothing.

One other side effect I’ve noticed is that it’s acting as an appetite suppressant. Unfortunately, I’m hypoglycemic. That means I have low blood sugar naturally, and I really do need to eat every couple of hours. So I need to pay MORE attention to food, since regulating my blood sugar levels will be VERY important if I’m not getting as many hunger signals.

I foresee a possible issue here. Not because the drug doesn’t work, but BECAUSE it works really well so far, with liveable side-effects. I know that doesn’t really make sense. I think maybe it’s my control issues coming up again – I really dislike the thought of HAVING to take something every day.

Actually, I really dislike the thought of WANTING to take something every day.

This is ridiculous. When I get a sinus infection, I take antibiotics, I don’t complain that I have to take pills for that. When I’m really congested, I take a decongestant and an antihistamine, and I’m happy when they work. I don’t complain about taking them. Maybe it’s because I know the antibiotics are short term, and I only take the antihistamines when I feel like need them. So what’s the difference?

I’m willing to bet it’s another control issue. Heh. One of these days, I’ll have to see someone about that!

I’m not sure that anyone who hasn’t experienced a loss of control over their bodies and minds can understand how SEDUCTIVE the thought of “feeling normal” is. I’ve spent the last couple of years redefining my “normal” and so far, it’s not a destination, it’s a process. An alternately lovely-and-fulfilling versus horrible-and-frustrating process.

I guess the trick is to really savor the lovely-and-fulfilling parts, while passing by the frustrating parts, taking in the lessons as you go. I mean, that’s the whole point of the Edison Tally, right? To concentrate on the lessons instead of the outcome.

So. This drug. Maybe it’s a lesson in itself. Certainly, it’ll be a constant reminder that I still have some work to do around control! It’s funny how this one little pill brought up SO MUCH STUFF for me! I actually like it when that happens, because I really believe you have to understand what’s going on in your head, behind the scenes, before you can make changes. And I’m all about making the changes.

Is anyone else out there on Modafinil, or anything else for specific symptom relief? What’s your experience with your medication? Has any of your medication brought up unexpected challenges for you? I’d love to hear from you, just “Comment” below!

MS Adventures – Modafinil, Day One

Today I went to my Doctor and talked to her about going on Modafinil. For those of you who’ve never heard of it, Modafinil is an alertness drug that was originally marketed as a treatment for narcolepsy and other sleep disorders. It’s also marketed as Provigil in the US and Alertec in Canada. Ages ago, my Neurologist suggested I try it, since my major MS complaints are fatigue (Hah! Total exhaustion more like! I wish there were more descriptive words for it!) and cognitive dysfunction, more colloquially known as “brain fog.”

CLICK HERE TO LEARN MORE ABOUT BRAIN FOG

At the time, I said no, because 1. I dislike taking pills and 2. I was in the middle of learning about behavioral- and diet-modification to try to control my symptoms. Now, I feel like I’ve taken those as far as I can, with some success (I’ll write about my diet discoveries soon) and I was ready for the next step. Pharmacology. In other words, pills. I’ve got a few articles below if you’re curious about it, or just do an internet search – there’s quite a bit of information about Modafinil, since it’s been out since 1994 or so, and used to treat several different ailments.

CLICK HERE FOR THE WIKIPEDIA ENTRY

CLICK HERE FOR INFORMATION ON MODAFINIL AND MS

CLICK HERE FOR SOME HISTORY ON MODAFINIL

So! I’ve taken my first pill. Once dose, once a day, in the morning. It’ll be up to me to discover if I need to take it with food or not. I just took it, so I’m not sure exactly how my system is going to react to it, but I’ll let you know tomorrow. I’m both scared that it won’t do anything and excited that it might!

PS I just noticed I used the word “colloquially” in the first paragraph. I feel smarter already!

MS and Caregivers

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Multiple Sclerosis and Caregivers from Michael Yonchenko on Vimeo.

“Multiple Sclerosis and Caregivers” is a look at the challenges of surviving in a relationship that includes giving care.

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Wow, maybe I’ve been a little selfish and a little ignorant, but because I’m not dealing with a Caregiver myself, I forgot what an important part of the equation they are. Kudos to this amazing video for pointing it out!

Managing Multiple Sclerosis – A Vimeo Video Series

I found these amazing videos on Vimeo, which means they’re publicly available and totally legal for me to post here on my blog (for as long as they’re up, anyway lol!)

Please watch, enjoy, and comment!

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5. Learning To Manage MS from Michael Yonchenko on Vimeo.

This is part 5 in the series, “Introduction to Multiple Sclerosis”.

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