Tag Archives: health

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 →

Typical MS Symptoms – Early Signs

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Before I was diagnosed with MS, I had no idea what was going on with my body. In my left eye, my colour vision was fading and I was light sensitive to the point of constant nausea. I actually went out and bought an eyepatch – and then drew a skull and crossbones on it with a white-out pen. Aaarrr Matie! As long as my eyes were open I had a headache so bad it bought tears to my eyes, and I felt this bizarre pressure, like there was an ice pick tearing into the back of my eye from inside my head. I found out later this is called “Optic Neuritis.” 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.

What is Multiple Sclerosis?

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I found this wonderful video showing exactly what Multiple Sclerosis is, in a really easy to understand format. I really like that it’s simple and clear, since most of what goes on with MS is neither of those things. It pretty much sums up what the Neurologist told me when I stood blankly in front of her saying “I have what? Are you sure it’s not a brain tumor?”

What do you think of the video? Let me know if you find it useful by leaving a comment below.

How to Deal with Fatigue in Multiple Sclerosis

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Ah, Fatigue. I’ve left some comments myself after this article, and I’d love it if you would to!

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15 Ways to Fight Against Multiple Sclerosis Fatigue

Multiple Sclerosis Fatigue is one of the number one symptoms and complaints of multiple sclerosis. And unfortunately one of the #1 reasons that many people with MS end up on disability. Multiple Sclerosis fatigue is real, and a prominent symptom for as many as 85-95% of those with MS.

Here are 15 ways to fight against fatigue. Just the little things that you do each and every day can make a difference. Continue reading →

Multiple Sclerosis and Wheelchairs

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Very interesting article, touching on an aspect of MS I hadn’t thought of. Read it (I’ve commented below) and leave your comments as well!

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He Warned Me

Eight years ago, Dr. Pasupuleti, my neurologist at the time, reluctantly gave me a prescription for a wheelchair. “When I give my patients this, they almost never walk again,” he told my mom and me.

“But doctor,” I said, “I plan on walking for a long time. Don’t worry. It’s just that right now, I’m so tired. And I’m especially tired of falling down. And lately I’ve been missing out on so much. You understand that right?” I was naively asking a middle-aged doctor to sympathize for the lost social life of a 27-year-old woman. Continue reading →

MS and You – Hey Baby, what’s your Med?

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I am involved in a Clinical Trial for a drug based on Retuximab. According to Wikipedia:

Rituximab, sold under the trade names Rituxan and MabThera, is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of B cells. It can therefore destroy B cells. Rituximab is used in the treatment of many lymphomas, leukemias, transplant rejection and some autoimmune disorders. [http://en.wikipedia.org/wiki/Rituximab]

As a double-blind trial, even if I started out in the placebo group, I would eventually be moved to the real drug anyway. Every six months for a year and a half I went to the hospital for a full-day infusion treatment, starting with an MRI, then a steroid infusion, then the drug. I’ve never had a reaction to the trial drug, but the first time I had the steroid infusion I went straight into shock – I remember telling the nurse my ears were sweating! They ended up loading me up with saline and putting me on a VERY slow drip for the steroid, so my 8-hour infusion day took like 13 hours. I am incredibly grateful for the nurse, Shae, who stayed with me to make sure all was well for the whole treatment. It seems to work pretty well, with no side effects that I’ve noticed. Before treatment I was having episodes or attacks (what do you call them, anyway?) every three months or so that were severe enough that I missed work, or (my personal favorite) just scrambled my brain enough I couldn’t actually understand spoken sentences. I heard syllables but not words, and the first time it happened I was convinced I was surrounded by people who were not speaking English… but they were.

I am now in an observation phase of treatment, and I haven’t had a major attack (I generally got Optic Neuritis and tremors) for two years or so. I really hope this drug makes it to market, but I’ve heard the process can take years.

I hate taking pills, so I’m not taking as many supplements as my doctors would like. I generally take a multivitamin and a calcium/vitamin D supplement daily. A friend of mine just gave me Maca to start taking, but I haven’t noticed a change in my energy levels from that yet. It’s only been a couple of days.

So what about you? What are your experiences with treatments? What treatments, allopathic or naturopathic, are you using? Does it seem to work? What side effects does it have? Would you recommend it over other treatments you’ve used?

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

Talk to me about Multiple Sclerosis

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After my initial diagnosis I felt … shocked and isolated and VERY glad I didn’t have a brain tumor. I was told MS was an autoimmune deficiency that is different for every person. Can you imagine my surprise when I came across this video with another lady describing MY LIFE?

Please leave me comments on how you reacted to your initial diagnosis, and what you think of this video. I was terrified at first because I didn’t know what to expect, and I don’t want you to feel like that – you’re NOT ALONE in this, there are other people who have been where you are and WANT TO TALK ABOUT IT!

So please share.