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.

***

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.

***

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.

***

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

***
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!

***

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!

My MS Treatment

My MS Treatment from Tanya Asbreuk on Vimeo.
***
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.
***

Diet and Multiple Sclerosis from John McDougall on Vimeo.

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

***
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!
***

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

***
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.

Do I Have MS? A Reply to A.A.’s Questions

Honestly I’m not sure if this is a good idea, but the day before yesterday someone emailed me through my “Contact Me” page and my reply email isn’t getting through to her email, so I’m posting my reply here. I want her to have this information and I don’t know how else to get it to her if I can’t email her. I would probably give similar advice to anyone who was wondering about MS or if they might have it, so maybe it’ll help someone else out there.

***

Hi Axxxxx,

Thanks for reaching out. I can’t even imagine how frustrated you must be.

I’m not a medical professional, but yeah, your symptoms sound familiar. What tends to really define MS, though, is the presence of sclerosis (white plaques or scarring) in your brain, so if nothing is showing up on your MRIs I’d probably assume it’s something else. Only 5% of the population generally ends up with a false negative or a false positive. When was the last time you had an MRI of your brain? You said the neurologist sent you for one of your back? Were you experiencing weird things going on at the time of your MRI, or had the symptoms subsided already? Continue reading

Headaches, Optic Neuritis, and Muscle Spasms


***

I recently had a chat with my massage therapist about these headaches I get behind my eyes. Before this conversation, I would freak out every time I got one of these headaches (which was a lot) because every time I’ve had optic neuritis it started with one of these headaches. Luckily, my massage therapist had another option for me, so now I don’t need to freak out every time one of these headaches pops up! They can be muscle related, and in this video I explain all about it.

<span st

How Expensive is MS?

***

I am so spoiled, so incredibly lucky. I am involved a clinical trial for MS and that means I don’t have to pay for my medication. At the beginning of the trial, I asked one of my nurses how much something like this would cost, if I had to pay out-of-pocket, if I wasn’t involved in the study. She told me about $80,000.00 and I thought my eyes were going to pop out of my head. I’ve lived in houses that cost less than that!

My heart breaks for Jason Da Silva, and once again I don’t understand the American Health Care system. Why do they feel so threatened by a system like we have in Canada? What’s so awful about allowing people access to free (or at least subsidized) medical care? Why do so many American people and corporations seem to think Obama is the devil for wanting to create a system like ours, in the US? If you have any ideas, tell me, because I’d sure like to understand.

New Breakthrough In MS Medication!

Woot! I thought this was pretty cool. I found this article on “Medical News Today” and I wanted everyone to see it even if I can only show the first two paragraphs here:

***

First Oral Treatment For People With Multiple Sclerosis Approved In Canada

Main Category: Multiple Sclerosis
Also Included In: Regulatory Affairs / Drug Approvals
Article Date: 11 Mar 2011 – 2:00 PST

Novartis Pharmaceuticals Canada Inc. announced that its new MS treatment, Gilenya™ (fingolimod), has received Notice of Compliance in Canada. Gilenya™ (fingolimod) is the first disease modifying oral therapy developed for the relapsing-remitting form of multiple sclerosis (MS) which is the most common type of the disease in adults. Unlike current therapies which all require daily or regular injections or infusions, Gilenya offers simple once daily oral dosing (0.5 mg) in a capsule, providing an efficacious and convenient treatment method for a complex and lifelong illness. Gilenya is approved for use in patients who have tried one or more MS therapies, but are unresponsive or intolerant to them.

“The approval of Gilenya is a significant milestone for the Canadian MS community,” says Dr. Daniel Selchen, a neurologist from Toronto, Ontario. “Oral therapies have been greatly anticipated by both patients and physicians who are eager for alternatives to injection and infusion therapies. With its excellent clinical trial efficacy data, along with convenience, Gilenya is welcome news for those seeking a new option to manage their disease.”

***

Please read the whole article by clicking HERE – it’ll open in a new window for you.

I’ve never had a problem with needles (thank goodness) but I have friends who pass out if they catch a glimpse of a puncture on TV. An oral medication would bypass the whole group of self-injection issues pretty handily, I think. There are (as usual) side effects, and the drug isn’t appropriate for everyone, but wouldn’t it be amazing to just be able to take a pill instead of dealing with injections or infusions?

It’s not a cure for MS, but it apparently does slow progression. It lowers the white blood cells, so does that make it an “immuno-modifier” or an “immuno-supressant?” In either case, you’d have to be careful when around other infectious people (like we’re not already!) and you’d have to decide with your doctors if this is the right treatment for you. I wonder why would it only be approved “for use in patients who have tried one or more MS therapies, but are unresponsive or intolerant to them?” It seems like a simpler treatment than most of the others I’ve heard about.

What do you think? Does this seem like a good idea to you? Is it something you’ll ask your doctor about? Is anyone involved in the Clinical Trial for this medication, or has anyone been put on it through their doctor? I’d love to hear what your experiences are.