The Snowflake Disease - MS

MS is called the "Snowflake Disease".

Why?

• Because everyone is different.
• Everyone's symptoms are different.
• Everyone's diagnosis comes about differently.
• Everyone's method of treatment is different. 

Just like every snowflake is different.

Note: Check out the poem at the very end.

MS being called "the snowflake disease" is aptly named. I totally agree. We'd never heard of this term until a few weeks ago. Cir was at one of his first Tysabri infusion appointments. There were other people in the infusion suite with MS getting their treatments as well.

One young lady, who was sharing her story with us, also shared about MS being compared to snowflakes. You see, every single snowflake is different - and there are tri-zillions of them. Well, that's really not a number, however, the idea is that for every person who develops multiple sclerosis, no two are exactly the same.

In anything. From diagnosis, to symptoms, to prognosis. Everyone is different, as I mentioned earlier. And even though this is true, every person with MS can relate to one another in some way because of these differences. They each love sharing their stories with one another and inevitably, they will find similarities sprinkled among those differences.

Whenever Cir goes in for his Tysabri infusion, there are usually several other MSers there as well. The question invariably comes up - "When were you diagnosed?" - and the stories begin. Everyone different, like snowflakes.

Diagnosing the snowflake disease

This difference, I think, is most likely what makes MS so difficult for doctors and neurologists to diagnose. Especially if the person presenting doesn't fit the "average profile" of someone with multiple sclerosis. There's no one-size fits all exam or test. Many doctors take a more or less elimination approach. They rule out everything else and what's left is multiple sclerosis. Of course, it's not really that simple, however, I kind of see why they might do it that way.

What other way is there when everyone comes to you with different symptoms to start out with. And many symptoms can be similar to those experienced by people who have other conditions. They can't just say that everyone who presents with numbness, spasms, optic neuritis, etc., has MS.

Some people experience bad headaches, and they end up being diagnosed with multiple sclerosis. Cir never had headaches, at least not that I, or he, can remember. He did have optic neuritis and balance problems in the beginning, though, before he was eventually diagnosed with MS. And optic neuritis is one of those symptoms that first leads doctors to suspect multiple sclerosis.

I've met people and told them that my husband has MS. Many times, they will ask if he's blind. We've met so many people with MS, and every single one of their stories is different, from when they were diagnosed, to how they were diagnosed, to what symptoms they have, to whether they are mobile or not. 

The worst most interesting disease ever

I have another name for MS. "The worst, most interesting disease ever". All the differences make this disease so interesting and also the worst on so many levels. I'm sure there are worse things that can happen to a person. However, the uncertainty that MSers face on a daily basis, makes this, if not the worst, most certainly, one of the worst diseases ever.

The "interesting" part, though, fits in with the idea of multiple sclerosis being the snowflake disease. What do you think? Would you call it that? I'm sure that you, as a person (or a loved one) with MS, might feel that interesting is probably not the word you'd use to describe the MonSter you live with in the form of multiple sclerosis.

However, being able to relate to others, is a good thing. And being able to share your story with someone else who understands what you're going through, is comforting. Even if your experiences are very different. Misery does love company... 

I love this willingness to share and be open about what's happening in their lives that many MSers have. It's very good in the sense that they don't feel alone. I think it helps when Cir doesn't feel like he's the only one going through life with this mixed-up disease.

So, by all means, keep sharing your snowflake stories. Your story may help someone who's been newly diagnosed as well as someone who's lived with MS for several years.

Each of you is beautiful, just like the multifaceted snowflakes used to describe MS. Each of you can learn to live with and deal with multiple sclerosis in your own way. Each of you will be greater than the disease that is now a part of your life, but which is not you.

Share your story or experience and know that MS does not define you. You are different than every other person with multiple sclerosis, yet you are not alone, just like the snowflakes.

IP Inclusive also gives a good explanation of the snowflake disease that is MS. (Link opens in a new window).

I know AI is a pretty controversial topic right now, however, every once in a while, I like to play around with it to see how it can write a poem of short story. I asked it to write a poem using this page as its inspiration. I did edit it and refine it a bit. Let me know what you think.

Would you like to share your story? Would you like to share a poem? If so, we'd love to read them. Follow the links to learn more.

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