Note: This is my personal story with information about my own experience with HSCT for MS. 

The information on this site is not intended to replace advice from your doctors. I do not give medical advice. 

Multiple Sclerosis

If you've ever Googled "Multiple Sclerosis" "MS" "Why can't I feel my legs" or "Why does my head feel fizzy" then you know that the search results are overwhelming.

This disease has many street names, including the snowflake disease. I prefer not to use that nom because too many others have ruined the symbolism of it, but in this case, it was used to illustrate how no two MS patients are alike in their symptoms. 

The medical definition according to the Mayo Clinic

"Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause the nerves themselves to deteriorate or become permanently damaged."

Essentially, that coating around the wires in our CNS have been stripped and so those frayed wires are shorting out. That means for symptoms: we could lose our vision, we could lose our balance or the ability to walk, we could lose our words, our memory and our ability to speak clearly. We could lose the ability to swallow as well. Our bladder and bowels will often their own agenda. If we can feel anything, often it's pain or pressure in our heads, muscles, eyes, extremities and torso. Sometimes, though, we feel nothing at all, we are numb. 

Now, keep in mind, not everyone has these symptoms to the worst degree, and often the symptoms are a la carte. You could meet me and not have any idea when you look at me that it hurts to move and smile back at you and I may not remember that we were even in the same room today. There are others who you see in a wheelchair or with a walker.

 

Snowflakes. No two are alike.

But it sucks for all of us.

Then there's the different types of MS. The most common is Relapsing Remitting MS (RRMS) and this type comes and goes. Secondary Progressive MS (SPMS), which indicates a progressive worsening of the disease over time. Many RRMS patients will eventually become SPMS. Primary Progressive MS is when the disease steadily gets worse without times of remission.

 

I am going to turn you over to the medical community at this point to give you more detailed information about MS. I'm sending you on to sources of information I trust, but this is not to say I am endorsing any one doctor or institution. This is also going to be a fluid page, where I continue updating the information as I get it. That includes from you, my dear readers. If you know something, send it on to me.

So be sure to click on the links over there and get as little or as much of an idea as you need to understand the disease.

And thank you for trying to understand.

Here are some great resources as you navigate the ocean of information about the disease: