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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.
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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.
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
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
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.
Unhasty Misadventures and MS Adventures 