Tag Archives: mental-health

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

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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.

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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 →

Stay Positive with MS!

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It can be really challenging not to let it all get to you. Here I lay out a couple of easy tips on how to “conjure up a positive attitude in the face of MS weirdness” – they work for me, so give them a chance and they may just work for you!

Haha! Watching this I see how often I tilt my head back as I talk, and perhaps I should be more mindful of giving such a view up my nostrils! Ignore that please, and just concentrate on the message!

Headaches, Optic Neuritis, and Muscle Spasms

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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.

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Project for Awesome – Youtube-er against MS

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Caution: Fluffee drops the F-bomb in this video so if you are offended by the F-word DON’T WATCH the video. Just go to the link I’ve posted below to donate to the MS Society of Canada directly if you want to help support their efforts against MS.

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I love “Project for Awesome!” Fluffee is a bit of a goof but he does a good job of laying out how MS can affect people’s lives. I wonder if he’s sold his piece of chair yet? Or the beanie lol?

If you want to donate directly to the MS Society of Canada, click the link below to be taken directly to their donation page. It’ll pop up in a new window. Spend some time checking out the rest of their awesome site while you’re there, too!

Click here to donate to the MS Society of Canada directly

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.

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 →

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 →

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 →

Dealing with Multiple Sclerosis – what do you do?

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In October 2008 I was diagnosed with relapsing/remitting multiple sclerosis after a series of three overlapping attacks earlier that summer. I was “lucky” because my initial MRI showed “textbook perfect presentation” of the plaques in my head (“Doctor, what’s that golf-ball looking thing doing at the bottom of my brain?”) so I didn’t need a spinal tap or any other really invasive procedures for an official diagnosis. Luckily, my diagnosing physician gave me the opportunity to become involved in a stage 2 clinical trial for a drug called Ocrilizumab, so I’ve never been on a beta-blocker like Avonex or any other self-injectable. My medical treatment has consisted of full-day infusions with steroids and the trial drug, once every 6 months for 2 years, and now I’m in an observation phase. I haven’t had a major attack since starting treatment! Woohoo! I am very blessed to have almost no physical symptoms, except for ongoing fatigue, some minor balance issues, and a dull patch of skin on my right outer thigh. I am fully aware of how lucky I am, but I still struggle to get through what used to be a normal day sometimes. The only real issue I still have is what I call “my dumb days” which my Neurologist tells me is a migraine, but I find it mightly suspicious that I’ve never had migraines before. On those days I can’t track information, it’s really difficult to concentrate, and nothing much actually makes it into my short term memory. Frustrating!

Fatigue is a very common and insidious symptom, since it’s not usually physically apparent. I’m not in a wheelchair or using a cane, so it can be challenging to help other people understand that I’m not always able to perform at 100% all the time. Or sometimes even 80%. It’s frustrating because I’m somewhat of a perfectionist and I’m very task-oriented, so doing a good job is very important to me. I realized pretty early that I needed a new way to look at my life, my tasks, and how I go about doing what I do on a daily basis. It’s led me to some choices and compromises, but I feel pretty good about where I am now! I’d love to help you get to a similar place!

So what have you done to cope? Is there something that’s worked really well for you? Do you have a favorite piece of music, or an affirmation that you go back to, or anything else that just makes it easier to get through the day or night?

Please share! Click on the “comments” link below to get started.