Introduction to 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!) I think they were created to make a DVD for the Multiple Sclerosis Association of America. I’m going to try and find the entire series to post over the next week or two – I’m not sure how many “episodes” there are yet. Please watch, enjoy, and comment!

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1. An Introduction to Multiple Sclerosis from Michael Yonchenko on Vimeo.

This is the first part of the series, “An Introduction To Multiple Sclerosis”.

What’s the Difference Between MS and CCSVI?

I’ve been very wary about “believing” in CCSVI as the miracle cure that a lot of people seem to be claiming. Dr. Zamboni seemed to me to be claiming too much, too soon, without a lot of research to back his claims up. Here’s an article explaining a little about it, and I’ll discuss it below.

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What Is The Difference Between Multiple Sclerosis And CCSVI?

While Multiple Sclerosis and CCSVI are two separate conditions, it is very easy to become confused between the two. In essence, they occur within the same part of the body and have very similar symptoms. It is also possible that one causes the other, or vice versa. These two medical conditions have been associated with the other since their discovery.

Before the recognition of diseases such as Multiple Sclerosis and CCSVI, doctors believed in all sorts of superstitions regarding the brain. It was not until the late 19th century that conditions such as Multiple Sclerosis, and other abnormalities of the central nervous system, were acknowledged. Soon, all doctors recognized the fact that mental illnesses are usually caused by disorders and injuries related to the brain.Multiple Sclerosis was first diagnosed in England by a man named Dr. Moxen. Slowly, more and more research was conducted on those who experienced phenomenons such as dizziness, numbness, and loss of control over bodily functions. But even in recent years, little information has been made available about the debilitating disease.

Before the recognition of diseases such as Multiple Sclerosis and CCSVI, doctors believed in all sorts of superstitions regarding the brain. It was not until the late 19th century that conditions such as Multiple Sclerosis, and other abnormalities of the central nervous system, were acknowledged. Soon, all doctors recognized the fact that mental illnesses are usually caused by disorders and injuries related to the brain.

Multiple Sclerosis was first diagnosed in England by a man named Dr. Moxen. Slowly, more and more research was conducted on those who experienced phenomenons such as dizziness, numbness, and loss of control over bodily functions. But even in recent years, little information has been made available about the debilitating disease.

When Italian doctor Paolo Zamboni discovered that his wife was victim of Multiple Sclerosis, he set out to research the condition and find a cure. What he discovered was that almost all patients of MS have narrow or blocked veins leading from the brain to the heart. Those with insufficient drainage of spent blood from the brain to the heart often had blood reflux back to the brain. This, he concluded, was the cause of the neuron damage that attributes to Multiple Sclerosis.He called it, “chronic cerebrospinal venous insufficiency” or CCSVI. This newly discovered disorder was diagnosed in some patients who had not experienced the neuron damage associated with MS. While Zamboni believed that CCSVI is the cause of Multiple Sclerosis, other medical professionals argue that it is quite the opposite. Perhaps, they say, patients with MS are simply very likely to have problems with their veins, as well.

Zamboni developed a procedure, best known as Liberation treatment, which involves the use of medical balloons or splints to widen the passages that drain the blood from the brain. These damaged veins were often found to be surrounded by lesions that are often associated with Multiple Sclerosis. When these veins were able to carry blood freely from the brain and central nervous system, these damaged parts of the brain were able to work correctly to send impulses throughout the body and control the functions of life as they should.

As for Zamboni’s wife? She has not experienced Multiple Sclerosis symptoms post-procedure, and is happily enjoying her life symptom free. About half of all MS patients experienced a complete elimination of all symptoms after opting for Liberation treatment. Within the United States, it is rare to find a doctor who is able to do the procedure, and it has been banned in many states save for when performed for the purpose of research. Many patients have resorted to traveled outside of the country to find doctors who are willing to perform the operation. They feel they have nothing to lose, and many have faith that it is the true cure.

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So here’s the thing: the only person I personally know who went for a “Liberation” treatment (on his own dime) got a whole lot of nothing out of it. He had it done over Christmas and he has noticed nothing. Nothing bad (except for his drained bank account,) but nothing good. I think the mistake is in assuming CCSVI and MS are the same thing. Maybe CCSVI is just another syndrome that shares a bunch of symptoms with MS, to the confusion of everyone involved. Have you heard that old cliche “too good to be true?”

I love the fact that so many people are posting videos about how the intravenous stent treatment for CCSVI has truly “liberated” them, I love that it IS helping a lot of people, but it’s not helping everyone with MS. At first I was very excited about the treatment, thinking “Awesome! A cure! Everyone will be able to get their lives back!” but the more I heard about it, the more it kinda sounded like “snake-oil” to me. Yes, I tend to be a skeptic.

And yet I wanted it to work – I wanted it to be at least a step towards the end of the hold MS has on the lives of those who live with it. It looks like it IS that step for some people – maybe someday soon there will be another step, and another, and more and more people with different symptoms of MS will be set free.

MS and Quality of Life

MS and Quality of Life from Tanya Asbreuk on Vimeo.

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I suppose there’s always a compromise between cost and quality of life if you have to pay for treatment. But what’s the cost for your quality of life?

In this video I continue the conversation I was having with Lisa who runs Brass and Ivory, a site chronicling her MS journey with links to a lot of other MS blogs, and Amy who runs MS Softserve, a soon-to-be-available NPO site offering customized learning about MS.

Caffeine May Slow the Progression of MS! Woohoo!

Ah crappity, I think the video was taken down, because I can’t even find it anymore on Vimeo. Anyway, here’s a link to a WebMD article about caffeine and MS. Funny thing, when I googled, the first link that came up was this article, and the next was one claiming caffeine makes MS worse. How about that?

Here’s the WebMD Article

And here’s an article saying caffeine is evil and makes MS worse!

OMRF: Multiple Sclerosis from SAXUM on Vimeo.

SAXUM PRODUCED VNR FOR OMRF

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Okay, I’ll admit it, I love coffee. I’m actually trying to cut down on the amount I drink, because I don’t want to rely only on caffeine to get me through the day. This video article was posted three years ago, and unfortunately I don’t know what happened with further studies on caffeine in MS, but I love the thought of not completely giving up coffee!

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Haha so upon further research: the study was only done on mice not people, on a condition “similar to MS”, and the equivalent amounts of caffeine given to these poor mice was more than anyone should be drinking in a day. So experts “wouldn’t advise people to change their caffeine intake.” Nuts! Further proof to not believe everything you find on the internet, even if it looks all shiny and official!

Great Reaction to MS Diagnosis – “Oh Thank God!”

The effects of Multiple Sclerosis touch daily activities, care givers and intimacy with spouse from Brokers Alliance on Vimeo.

The first signs of Multiple Sclerosis: dizziness, blurred or double vision –No family history-MS is not a death sentence.

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This is a video of a radio interview with Susan Kelly, an RN who has MS and volunteers with the National MS Society, with some great stuff coming out. They talk about how a diagnosis of MS is definitely preferable to a brain tumor, how to “manage your energy bank,” and how she and her family manages her MS. She keeps a very positive and humorous attitude and it’s really awesome to hear!

My MS Treatment

My MS Treatment from Tanya Asbreuk on Vimeo.
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It’s important to be able to make informed decisions on the treatments you going to undergo, especially if they’re drugs that you’re going to be on for a long time. Here I discuss the options that worked for me.

The two ladies I’m talking about or to are Lisa who runs Brass and Ivory, a site chronicling her MS journey with links to a lot of other MS blogs, and Amy who runs MS Softserve, a soon-to-be-available NPO site offering customized learning about MS. Both are amazing resources, so I encourage you to check them out!

Diet and MS – a Different Perspective

Just so you’re all aware, this video is a complete lecture so it’s just over an hour long. It’s very interesting and the speaker is quite engaging, though! He has some very different ideas, and I don’t agree with all of them, but it is entertaining to listen to him.
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Diet and Multiple Sclerosis from John McDougall on Vimeo.

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Dr. John McDougall talks about the importance of diet and the effects it has on Multiple Sclerosis.

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I’m honestly not sure what I think of his ideas, but he’s obviously done a lot more research than I have. In my video about my MS treatment I mention that eliminating complex carbs from my diet has seemed to increase my energy levels, yet here’s a doctor encouraging people to eat a starch based diet.

So what do you think? Do you have any opinions or experiments you’ve done with you own diet that has seemed to have some kind of effect on your disease, whether good or bad? Please share your experiences by commenting below!
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If you are at all interested, here is a link to “The Multiple Sclerosis Diet Book” by Dr. Swank, the doctor that Dr. McDougall (the lecturer) called “his personal hero” and features as a video in his presentation.

My MS Disclosure

My MS Disclosure from Tanya Asbreuk on Vimeo.

http://unhasty.com

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In this video I talk about discussing your condition with other people, and where you might need to be mentally before you’ll feel comfortable doing it.

How To Change Your MS Story

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Have you ever noticed how the “stories” you tell yourself can impact your attitude, your energy levels, and ultimately your health and recovery? I’ve thought about this a lot, so I decided to talk about it!

What’s your favorite “story” that you keep going back to? The one that comes up every time you start feeling down or under the weather? Once you notice it, try to rewrite it to make it more positive. Just change the wording – instead of “I’m too tired to do this” change it to “I am really looking forward to going to sleep as soon as I finish this task.” Rewrite your story with yourself as the Hero! Why not!?!

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Haha! Yes, I had notes, and I’m looking down at them probably more than I should. I use notes a lot since I sometimes have a hard time keeping my train of thought going in one direction, so when I have something specific to talk about, I write parts of it down first. Hopefully I’ll get better at this as time goes on!

Woot! I’m Featured on Another Blog!

This is so cool – I’ve connected with another lady who has MS and runs a fantastic site at http://www.brassandivory.org. (Don’t worry – if you click it’ll open up in a new window and you can still look around here later.)

Anyway, she links other blogs to her site, and she linked me! How cool is that? She also runs the “Carnival of MS Bloggers – a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis” (her quote) that I’ve submitted an article for.

This is her blog past linking “new MS bloggers” to her site:

Brass and Ivory – my shout out!

This may seem narcissistic, linking from my blog to another blog about my blog, (say that five times fast) but it just made me feel really good about reaching out to people with my blog, and knowing there are people out there who appreciate it. So yay!