Tag Archives: diagnosis of multiple sclerosis

How Expensive is MS?

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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!

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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:

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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.”

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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.

MS and Cognitive Impairment

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In this video I talk about the cognitive impairment associated with my MS, and how it’s helped me take myself less seriously while (weirdly) improving my methods of goal setting. Watch it and let me know what you think by clicking the “comments” link below.

How to Live Abundantly with MS

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The more research I do into MS the more personal Heroes I find. How amazing to know that there are so many people out there who do not consider themselves “victims” of a disease, who don’t lose hope, who still love themselves and their lives even when facing issues that might emotionally cripple other people. The author of this article is “planning her next remission” while lying in bed during a relapse. How amazing is she?! Read what she has to say and let me know what you think by hitting the “comment” link below.

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Living Life Fully and Abundantly with MS

Continue reading →

Don’t Be An MS Fatigue Martyr!

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This article made me snicker, not because of the content but because of the ATTITUDE!

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Your Battle Plan for MS Fatigue

Fatigue is probably one of the most complained about Multiple Sclerosis symptoms. We’re not talking about some ordinary fatigue here; but fatigue that incapacitates you physically, mentally, psychologically and emotionally as well. As if having Multiple Sclerosis wasn’t depressing enough, the degree to which your already low reserve of energy and strength is sapped is sufficient to halt any and all activities and often does.

Did you have a plan to do this or that? Well guess what? There’s a very good chance it may not happen. At least not when you had originally planned. Of course, if you’re the one with Multiple Sclerosis, we’re preaching to the choir here. You already know how it can profoundly affect your daily activities, but you should also be encouraged to know that you can do something about it. If you want to counteract the way fatigue impacts your daily life, read on. Continue reading →

A Typical Day with MS, and Why I Like Having Multiple Sclerosis

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So it probably sounds strange, to hear me say “I like having MS” but just watch the video. It’s more correct to say I can appreciate certain things about living with MS. I think we create a lot of our experience by the way we choose to look at things, at situations and circumstances. I think we have control over how we look at things, even if we may not control those things themselves. I know my attitude helps me get through things that used to be very, very difficult for me to face. I just needed to look at things differently.

What about you? Do you notice a difference in your energy levels when you’re in a great mood versus when you’re in a crappy one? I don’t mean a “good day” versus a “bad day” physically. I know I can have exactly the same symptomology two different days, the first one can be h*ll to get through and the second one easier just because I’m in a bad or good mood over something else.

How to Talk to Others About Your Multiple Sclerosis Condition

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I heartily agree with what Christopher Jacoby has to say in this post. Take a look, read my comments after the post, and let me know what you think by leaving a “comment” of your own:

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The first step in being prepared to deal with people reactions of your Multiple Sclerosis is by understanding your own condition. If you want people to understand your health problem, you’re the one that should educate them. Continue reading →

My First MS Symptoms and How I’m Helping Others

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This is my first video interview about this site and why I set it up. I’ve been told that “First is Worst” and it can only get better from here, so I’m hopeful! It was recently pointed out to me that many people with MS develop issues with their vision, so I thought a videoblog would be a better medium of communication (I can’t believe I didn’t think of that, since Optic Neuritis was my first and is one of my recurring symptoms) so I’m going to make an effort to do more videoblogs or at least add audio to the articles.

What’s your opinion? Please share! Click on “comments” link below.

Early Symptoms of Multiple Sclerosis

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I came across another great article on the topic of early symptoms of MS. Here it is for your reading enjoyment, and I’ll comment on it afterwards.

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The Early Signs of Multiple Sclerosis

There are several early signs of multiple sclerosis. Have you ever experienced tingling, numbness, loss of balance, weakness in one or more limbs, blurred or double vision? These are some of the most typical signs or symptoms that might suggest to a doctor that you have multiple sclerosis.

The signs may come on so gradually that you may not even know you’re having any symptoms until you look back years later. The signs can range from very mild to very severe. When mild, the signs may be barely noticeable. When severe, you may end up in the hospital wondering what is going on. The doctors may have to put you through several tests to find out the cause of your symptoms. Continue reading →