Friday, March 12, 2010

Have You Heard of It?

It's called Malignant Multiple Sclerosis.

I didn't know anything about it until a fellow MS'er, and someone who I like to call a friend, told me that this is her diagnosis. Malignant. Multiple. Sclerosis.

I had no idea that this form of MS existed. And I had no idea that a person with MS could hear the word's "Actively Dying". Can you believe that! Kelly, my friend, was told that she has one year to live and that she is actively dying. Now let's be real here for a minute. Aren't we all actively dying? I mean, from the day we're born, we're one minute closer to death. That's just how it is.

When I read these words, I was sickened. Why didn't I know this? Why didn't I know that this was a possible form of my disease. Although rare, it is still out there. Still a small chance, percentage, possibility, that she, could be me. But right now, it's not. It's her, and plain and simple, it fuckin' sucks! She is 31. She has 4 children and a loving husband and she has been told to pretty much make the most of it. I know her from the wonderful world-wide-web, never met, never spoke, but I feel an attachment to her. Maybe it's just a bond that many of us share with those who are suffering through some of the same quirks life brings our way.

I asked her permission to speak about her situation and those words, "Actively Dying". I can't get them out of my head. I wanted to let all of you know, that this disease can be deadly. As blunt as that sounds, it's the truth. Did you know? I don't know the facts of Malignant Multiple Sclerosis and I'm not going to pretend like I do.

I talked to my husband about it the other night...

"I want to talk about it on my blog. I can't believe I didn't know about this, why didn't I know? Did you know? (Of course he didn't know.) I want people to know about this. I want them to know that it's not just that people with MS will most likely live a more difficult life, but lucky for them, they'll still live. Unlike other diseases, but that's not necessarily true. Does that make sense? Anyway, I'm upset at the lack of....media coverage there is for a cure for MS. Yes I am more concern now because I actually have it but can you blame me? I mean, how many people actually donate to a cause without knowing SOMEONE dealing with that particular cause. I can't name a person. That's neither here nor there but I want to post something just so people know. Hey! It's out there! Be aware! Am I making any sense?"

That's pretty much how the convo went, he didn't get a word in edge-wise. I have all my greatest thoughts at night. He was nodding off and I went on the rampage. Bitching about the lack of knowledge of what Multiple Sclerosis actually is and what it can actually turn out to be.

I HAVE IT - and I didn't even know. That speaks volumes.

Share what you know with others. Let's find a cure.

Malignant Multiple Sclerosis, also known as Marburg Variant Multiple Sclerosis, is a particularly aggressive form of the disease. Thankfully very rare, this highly aggressive form is defined by its swift and relentless decline to significant disability or even death, often within a few weeks or months after the onset of the initial attack.

6 comments:

Anonymous said...

Thank you for sharing Sarah. I frequent the MS page on facebook and I know Kelly. Probably not as well as you or others but I see her bouncing thru and she puts a smile on my face. I had no idea about malignant MS. And now I know what people really mean when they say "my mom died from MS" or "my cousin died from MS". I have MS...I didn't know it could get to that place where you can actively die. My prayers to Kelly and her family.

The Pitter Patter Boutique said...

I know exactly what you mean. I use to get so angry when I read comments like that from people, "My father passed from MS", "My sister passed from MS" and so on. I thought, "People can not die directly from MS but they can pass from complications caused by MS".

I was upset because up until now, I didn't know that this was true. I thought they were just family members who were understandably upset by the passing of someone they loved, and that they blamed it on the MS. I didn't want others, especially those who are newly diagnosed, to be discouraged to live a happy and fulfilling life because they saw these types of comments.

Now I know that I was wrong. It can happen and unfortunately, it is happening to someone we know.

Anonymous said...

Honestly.........I thought that people "gave up" and died from having MS. Do you know what I mean? It's depressing as hell this disease! I was dx in October 2009 and there were times when I thought there was no way in hell I could continue to live like this. I'm just speechless about this malignant MS.

Anonymous said...

oh gosh. this is SO sad. i got dx in dec 2008 and was not familiar w/ malig. ms either. Wth?! As a mother, my heart aches for her. I wonder how this diagnosis is found -- just steady progression since diagnosis? or a specific amount of lesions in specific places? How long has she had MS? I learn something new about this sucky disease everyday. Will say a prayer for your friend. So sorry to hear this sad news.

Laurel said...

I'm really curious how this would enbe diagnosed. I hope your friend will consider getting a second opinion. Nobody needs this kind of decree hanging over them! Peoplem are sometimes given a short period to live, but they prove doctors wrong. I know of someone who had brain cancer and was given 6-months. 20 years later he's still well and alive!

The Pitter Patter Boutique said...

I was diagnosed in October 2009 too. Not a great thing to share but at least you know someone who was diagnosed very close to the time you were.

Here are some of your questions answered. I'm no doctor, I'm just getting this info off the net. If you're seriously curious about this form of MS, talk to your Neurologist about it.

How is Malignant MS diagnosed? - Also known as Marburg's Variant and Acute Multiple Sclerosis. This is a label given to forms of MS where the disease progresses very rapidly from onset leading to severe disability within a relatively short period of time.

I'm unsure as to how long Kelly has had MS. She's currently in the hospital and not doing very well. It's my understanding that it's not MS related but there running tests to be sure. As I'm sure you all can understand, I don't want to bother her with any questions right now. She's having a rough time.

Laurel,

Unfortunately, she has been given this diagnosis and looked over by 3-4 doctor's I believe. I could be off a bit on the number but she's definitely had more than a second opinion.

I definitely believe we have the power to prove the PHD's wrong. And I also know that some are just plain out wrong.