Doing your own research

When I was first diagnosed with MS, even before it was definite, I started looking into it. I wanted to learn more, about how the disease works, what treatments were out there, how people handled it, what the future may look like for me. I think most people do the same thing when they are told something so life-changing. Perhaps it is to remove fear, that fear of the unknown. Perhaps it is to feel some control over an uncontrollable future, to learn what can be controlled to ensure the best possible outcome. Perhaps it is to know what is possible, what can be achieved. Whatever the reason, the first step is usually Google, and when we start looking for answers online we need to ensure what we’re looking at is reliable.

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In the MRI



The sounds are deafening, but more than that, you feel them vibrate every inch of your body. Invisible signals are being sent through you by the coils of incredibly powerful magnets trying to make a picture of your brain and spinal cord, trying to see if your body is fighting against you. You lie motionless on the table, your head is “cushioned” in place with a cage over your face. A tiny mirror is meant to comfort you as it shows you the room beyond your feet.

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Whilst Covid-19 is another kind of flu, and it’s likely that you’ve had a coronavirus flu in the past, it is significantly more serious than what you would consider the seasonal flu. The seasonal flu typically kills 0.1% of those it infects each year, Covid-19 is currently killing around 1% of those it is infecting, meaning Covid-19 is 10 times worse than the seasonal flu. As it stands we don’t have a vaccine for Covid-19 and no way to effectively treat the disease. It is spreading quickly, asymptomatically, and has the potential to cripple our economy as well as impact those we care about. I could dive deeply into the science and statistics behind Covid-19 but what I want to focus on is what we can do to decrease our risk, to decrease our community risk, and how it relates to those of us taking disease-modifying drugs.

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EXERCISE and multiple sclerosis

A relapse is a scary experience. For me, I lost my ability to walk properly without falling over, hearing in my right ear, and strength in my right arm. I thought it was permanent. After about a month those symptoms abated and I could hear, lift and carry my son, open things, and walk again. Not simply walk, but I could run again. It took time to feel confident in the movement, just as it took time with bouldering to feel that my arm would support my weight as it once did. That relapse was a reminder to me that the strength, flexibility and overall fitness of our bodies should be something we strive for, not only for the obvious physical benefits but for the deeper biological benefits as well. For people with MS, it can reduce the severity of relapses, improve quality of life, and help regain control and movement and thereby maintain independence for the rest of your life.

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using DIET to help manage your ms

One of the big things I advocate is to take control of the things that are within your control. With a disease like multiple sclerosis we can’t control when our relapses happen, nor how they will affect us. What we can control are other aspects of our health that are known to have negative impacts on our bodies and minds, regardless of whether you have MS or not. We can take full control of our diets, our exercise, the amount of stress in our lives, the disease-modifying therapies we may take, the picture of our overall lifestyle. With that in mind I’m going to summarise the 3 most talked about diets designed for multiple sclerosis to hopefully help you make an informed decision about what you will change to help manage your ms.

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FINDING support

Getting a diagnosis of multiple sclerosis is a hard pill to swallow. The future can feel more uncertain than it did before and you can get caught thinking about all the “what if’s“. One of the biggest fears I’ve had to deal with is that of being a burden and feeling alone in my journey. Does that sound familiar? It is one of the things we need to work past in building, maintaining and accessing our support networks.

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QUESTIONS for your neurologist

Unfortunately, multiple sclerosis is often misattributed to other conditions when symptoms first appear as it shares so many characteristics of other often benign conditions. My MS was almost missed when my first relapse was diagnosed as vertigo. If I hadn’t pushed to keep investigating my symptoms, I would have seen a physiotherapist to treat vertigo and as usual for relapsing remitting MS my “vertigo” would have been treated as my relapse corrected itself within a few weeks. My MS could have been missed.

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