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Saturday, December 18, 2010

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.


  1. This is wonderful Josi. I also have the terrible lesion in my neck that causes the complete numbness when I bend my neck down. Keep it up hun and I can't wait to read more.

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