Raising Awareness Thursday - Multiple Sclerosis

This disease/cause is near and dear to me. Okay, maybe not so dear, but it's near. I was diagnosed with MS in 2004. I was 26 years old with a 10 month old baby. I was also the third generation on my maternal side to have it. My mom has it also, and her mom had it for 10 years before she passed.

First, MS or Multiple Sclerosis, roughly translated is "multiple scabs." Pretty, ain't it? Not. Seems like they could come up with something more distinguished sounding.

These scabs or lesions are on the nerves in your body. They are in the brain and on the spinal column.

I'll tell you the 4 kinds of MS and then I will give you the clinical definition. Which is kind of difficult to understand without a picture, right? So you all are getting a picture whether you want it or not! Heh.

Please don't quit reading. I know it's a "boring" health post, and I hate whining about MS, I do, but I want everyone to be aware of this disease. It's not a "popular" or "glamorous" disease with a Hollywood spokesperson, so it's relatively unknown.

The 4 kinds of MS:

1. Relapsing/Remitting Multiple Sclerosis (RRmultiple sclerosis):

This is when the MS waxes and wanes. You'll have a flare up and then it will get better and sometimes disappear altogether. It can be years in between flare ups.

2. Secondary Progressive Multiple Sclerosis (SPmultiple sclerosis):

This kind of MS starts out at RRmultiple sclerosis and is when the patient begins to have deterioration in nerve function with or without relapses. (which is another topic completely, the disease really makes no sense, at all.)

3. Progressive Relapsing Multiple Sclerosis (PRmultiple sclerosis):

This kind shows clear progression in the level of disability from the time symptoms first begin, but with episodes of clear relapses that may or may not be associated with some recovery following the acute episode. This form of multiple sclerosis follows a progressive course from onset, punctuated by relapses. There is significant recovery immediately following a relapse but between relapses there is a gradual worsening of symptoms. (um. this confuses the crap outta me, but whatever.)

4. Primary Progressive Multiple Sclerosis (PPmultiple sclerosis):

This type of multiple sclerosis is characterised by a gradual progression of the disease from its onset with no remissions at all. There may be periods of a leveling off of disease activity and, as with secondary progressive, there may be good and bad days or weeks. PPmultiple sclerosis differs from Relapsing/Remitting and Secondary Progressive in that onset is typically in the late thirties or early forties, men are as likely women to develop it and initial disease activity is in the spinal cord and not in the brain. Primary Progressive multiple sclerosis often migrates into the brain, but is less likely to damage brain areas than relapsing/remitting or secondary progressive - for example, people with Primary Progressive are less likely to develop cognitive problems.

Clinical definition:

The ultimate cause of multiple sclerosis is unknown. The probable cause is thought to be a combination of hereditary factors, an environmental trigger like a virus and a defect in the immune system. Multiple sclerosis is an autoimmune disease, meaning its cause is an attack by the body's own immune system. For unknown reasons, immune cells attack and destroy the myelin sheath that insulates neurons in the brain and spinal cord. This myelin sheath, created by other brain cells called glia, speeds transmission and prevents electrical activity in one cell from short-circuiting to another cell. Disruption of communication between the brain and other parts of the body prevent normal passage of sensations and control messages, leading to the symptoms of multiple sclerosis. The demyelinated areas appear as plaques, small round areas of gray neuron without the white myelin covering. The progression of symptoms in multiple sclerosis is correlated with development of new plaques in the portion of the brain or spinal cord controlling the affected areas. Because there appears to be no pattern in the appearance of new plaques, the progression of multiple sclerosis can be unpredictable.

Here's the above paragraph in a picture...a purty one.

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In case you are wondering, this is not me. I wouldn't pose nude with my nervous system showing wear a bun in my hair.

Here's some crap in laymen's terms because I really don't want to bore you too much with clinical speak. This is what I've learned since my diagnosis:

1 in 5 lesions are active.

Active means that you are showing some kind of symptom or the lesion is growing.

Some people have MS and never know it. They never have symptoms that are obvious.

You could have 100 lesions and never have problems.

You could have 1 lesion and be wheelchair bound.

If your mother has MS you have 1 in 50 chance in getting it.

If your father has MS you have 1 in 100 chance of getting it.

Roughly 2-3 percent of people with parents who have MS get it themselves.

It's more common in moderate climates than tropical ones.

Women are more likely to have it than men.

The lesions on the spinal cord tend to do more damage than ones in the brain.

If you have MS your nervous system has to work 4 times as hard as a healthy nervous system to

do anything.

They measure progression by MRI's and clinical showings.

You could have a bad MRI, ie: lots of active lesions or new ones and no clinical symptoms OR you could have a good MRI, ie: no new lesions, and a bad clinical showing or lots of symptoms. I told you it makes no sense whatsoever.

The odd thing is that you just don't realize some of the things that are affected by this disease. It can be very obvious and you can't walk. Or it can cause something seemingly small like urinary retention: you gotta pee but you can't make the muscles relax to actually go. The nerves are damaged somewhere between the brain and the urinary function. Some patients end up catheterizing themselves for the rest of their lives.

Some interesting facts about my families experience with this disease:

My maternal grandmother was diagnosed at 53.

My mother was diagnosed at 41.

I was diagnosed at 26.

When my grandmother was diagnosed there was no treatment.

When my mom was diagnosed there was experimental treatment.

When I was diagnosed there were and are several options for treatment.

My mom and I are both on treatment. We take Avonex. (once a week, inter muscular injection)

Treatment for MS is very, very expensive. Up to 500 dollars a week. (me, me! raises hand. so excited about that bullshit. and yes, it is bullshit.)

It has affected us all in different ways.

Dr's all have different opinions and ideas about symptoms. Lots of Dr's know nothing about it or have some very misinformed facts.

I have RRmultiple sclerosis. I've had it for 6 years.

My mother has RRms also. She has had it for 15 years.

From about mid torso down to my toes I have weird sensations. Hot is cold, cold is hot.

My stomach is peppered with small scars from burns where I leaned against the hot burner on the stove and didn't know it.

My mom sometimes uses a cane.

When I had my first run in with the disease, I had to use a walker for a short time. Have you ever been glared at by old people who think you're screwing around?

Or people in Walmart who think you're drunk?

Here's an interesting map I found for MS distribution:

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If you've made it this far, I sincerely thank you for sticking with me. If you have any questions, please ask! I don't know it all, but I can find out for you.

Also, my F-Bomb Friday is an interesting/freaky MS related post. Please come back and read it tomorrow so you get the full picture of one of many reasons I get so freaked about my kids ending up with it.

Click here if you want my personal story of my own beginning with MS.
Have  a great day everyone, and please read the other posts that are linked when you have time!