Dealing with Multiple Sclerosis – what do you do?

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.

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