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Saturday, December 18, 2010

2:30 In the morning, and still no sleep.

Well, I'm still awake.  I feel exhausted but my body just will not fall asleep, and I'm supposed to go Christmas shopping in the morning with a friend.   I don't have that many friends these days, mostly due to my M.S., so when a friend asks to spend time with me, no matter how bad I feel, I try to jump on the opportunity.  Shopping is getting more difficult for me, because the muscles in my legs seem to give out, and collapse after about 50 feet of walking.  My leg braces help keep my feet pointing in the right direction whenever I walk so my walking looks much more normal, and is less strenuous on me.

When I first got my leg braces, I hated them, but now they are my friend, because they keep me mobile and help me get where I need to go.  I just wish that they looked a bit more attractive.  I am getting some new shoes to wear with them.  As you can see, the shoes that I have are well beaten up from stumbling so much.

Tonight I noticed some numbness in both of my legs, and hope it clears up in the next day or so on it's own.  If not, I will have to call my neurologist and report it.  I'm hoping not to have another round of steroids.

Since I'm having a friend over tomorrow, I'm hoping to finally get the star put on top of the Christmas tree so that I can take a picture of it to share on this blog.  It's such a beautiful tree!!!!    Anyway, off to bed to try to get at least a little bit of sleep.  I can't wait to see how tomorrow turns out.  Shopping is difficult for me because of my legs.  Fortunately, many major stores provide electric scooters, which help me a great deal, and help me feel more independent.  I just wish that those baskets on the front of the scooters at walmart were larger.  They must think that handicapped people don't need to buy much.

Sleeping Every Other Day???

I've been awake all night but that isn't unusual for me.  Lately I've been awake about half of my nights: every other one to be exact. This started earlier this month, and I'm deciding whether to tell my neurologist about the problem, or hold out and see if the problem corrects itself.

Many, if not most of the people I speak to online with M.S. have sleep problems. Usually, like myself, they are exhausted all day but cannot sleep at night. What's up with that????

On a lighter note, my christmas tree is up, and I'm just waiting for some help to put the star on top of the tree, as I'm a bit too wobbly on my feet to stand on something to reach.  Pictures soon to come of the tree. :)

Today's random photo:   My Meds

So my blog begins....

Hi, my name is Josi and I'm 35 years old. I'm divorced with no children.

 Two years ago, I began having headaches.  I had never had headaches before, so I found these odd.  I was also having trouble swallowing and projecting my voice.  Sometimes I would try to turn door knobs, and think that the door was locked, only to have the person behind me open it right up.  I also began falling, because my ankle on the right side of my body would suddenly give out.  I wasn't sure what to make of it all.  I wondered if I was going crazy.  Sometimes I would try to speak to people, but barely a whisper would come out of my mouth.

Worried that I had a brain tumor, I began consulting doctors, who all assured me that nothing was wrong.  Many rolled their eyes at me.  I was called a drug seeker, a hypochondriac, and of course, crazy.  I began to believe what the doctors told me until one day when I got a headache so bad, that I went to the emergency room.  Concerned by some of my symptoms, the hospital performed an emergency MRI and this is what they saw.  

The emergency room neurologist on call came into my room to deliver the bad news.  He believed that I had a  type of brain tumor known as a low-grade glioma.   I was crushed. He referred me to a neurologist who began doing a battery of tests.  During this time, while awaiting my results, something odd happened. 

One night, when I got out of the shower, I noticed that my feet were numb.  Both of them.  By midnight, the numbness was up to my knees, and I could no longer walk properly.  By the next day, the numbness was past my hips, and in both arms.  Terrified, I called my neurologist who immediately ordered more tests, and a second set of mri's...this set including my neck and spine.  

A week later I got a phone call from my neurologist's office... I was to go in immediately.  When I went in, I was told that I had ms.  I didn't cry... I was just stunned, and a bit relieved that I didn't have a brain tumor after all.  The neurologist wasn't sure what kind of MS I had yet, and told me that I had a week to choose which medication I would be using.  I was sent home with books and videos, which I studied closely.  I chose rebif as my first medication.  Since then I've switched medications, and am on Avonex now, because the Rebif made me feel sick too often.  Different meds work differently for different people, and Rebif just wasn't for me.  

Since then lots has happened, including the disease progressing to the point that I now wear leg braces and use a cane.  I still love life.  I'm still a happy person, and can't wait to share some of my photos on this blog.  

The neurologist said that my lesion is tumoreffective..meaning that it mimics a tumor.  In this scan without contrast, you can see that the lesion has mass, and looks very much like a brain tumor.  No wonder I was misdiagnosed at first.

This is the lesion that my neuro found in my neck.  This is the one that caused all four of my limbs to go numb. Whenever I look down, my body goes numb.  My neuro says that this lesion is why.

Well, now that I've introduced myself, and showed some pictures, I can get on with my daily blogging.  That way I can share my journey with others so that maybe I can help or educate others.