I sometimes find the definition of multiple sclerosis to be overly scientific. Hopefully this definition is not too "scientific" for you. With that said, here's how I explain multiple sclerosis to anyone who asks what it is.
MS is a chronic disease where it is believed that the body's own immune system attacks itself. White blood cells mistakenly attack the myelin sheath; a fatty covering that insulates and protects the nerves. The damage which occurs in the brain and/or spinal cord is called demyelination.
Healthy nerves become exposed when demyelination occurs, causing abnormal or mixed messages to be sent to various parts of the body. Spasticity, muscle weakness, and drop foot are some examples of MS symptoms Cir deals with.
A simplified definition of multiple sclerosis deals with the scars or lesions - sometimes called plaques - in the brain and spinal cord. In very simple terms, multiple means "many" and sclerosis means "scars". We can see the scars on the MRI scan that was taken of Cir's brain. (We'll soon add pictures here that show his MRI results).
Cir has now progressed to the point where he needs to use intermittent catheters because of bladder problems. He also has general weakness on the lower right side of his body and needs to wear an afo or ankle-foot orthosis. The areas of demyelination which causes these common symptoms of MS are on the upper part of his spinal chord.
No two people are alike
You can also have lesions or scars in these same areas like Cir does, but have a totally different set of symptoms. Your MS could be milder or more severe with only one or very few lesions. However, the majority of people with MS - around 85% - will never even reach the point of having severe disability.
Everyone's MS is different. Sure, there are plenty of similarities. Even if your symptoms are nothing like someone you meet who also has MS, don't let this scare you. Your experience is not going to be the same as anyone else and vice versa.
Listen, but be an active participant
Many of us are afraid to talk to our doctors and neurologists. This is something you need to learn to do. You can ask what their definition of multiple sclerosis is. Ask what you might expect from your MS, based on their evaluation of you.
Reading this website is a good start, but we're not doctors. We've read a lot and continue to read and learn as new information about MS becomes available. And oh yes, we live with it. But I still learn something new every time I pick up a book or magazine about MS and so does Cir.
Click here to read one woman's journey of MS
But as I said earlier, you need to become an active participant in your health care. Learn how to manage your particular MS symptoms. Write, "so to speak", your own definition of MS and then educate your family and friends. You need to educate your doctors - especially your neurologist - about how you're feeling, also. For as long as I can remember, Cir has always been this way.
A good GP
One thing Cir and I appreciate about our general practitioner is that he admitted he needed updates on the available treatments for multiple sclerosis. He asked us to bring him information. Surprising I know! We're really glad to have him as a part of Cir's team of doctors.
Even though multiple sclerosis is chronic or long lasting, the disability that results from it won't keep some MS sufferers from leading long, active lives. They've written a definition of MS that for them is definitely manageable. Hopefully you are in this category. If so, I say go for it! Be, or should I say do, all that you can do!
This, like I said at the beginning, is a simple, not too scientific definition of multiple sclerosis. You will find more in depth and specific information on the other pages of our site.
If you have specific questions, by all means contact us here or keep coming back as we add more information.
Want to find out about the Prognosis for Multiple Sclerosis? Click here.
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