Monday, January 31, 2011

My M.S. story

my story
I guess this is my story about my journey with m.s. So...(also posted here)

The summer of '07 I spent a week at a lake with my family! I rested through alot of it, but I basically baked. When we came home my hand was numb in three fingers. Weird, okay, so I told my doctor about it and we thought nerve entrapment. So a routine mri was scheduled.

I Took my Valium and tried to zen and yoga breathe through my first mri. Later that day, I was called back for another MRI NOW. They would not say why, but I went in at midnight. By then I had read my referral and was freaking out!

I got to a neurologist very quickly and well he said m.s. almost immediately. I have a large lesion at C2 that was suspect. So, I did another MRI in three months, repeat x 2. This continued until I went through what was personal hell of a lumbar puncture.

Again, he said he felt it was M.S., but most of my other tests were negative and I didn't really have any spots on the brain.

So, I started copaxone on a more than likely diagnosis. Long story short, I moved to Idaho and got a new neurologist. More MRI's and she questioned the M.S. diagnosis. So I stopped the copaxone and waited for an answer again.

I ended up at a M.S. specialist in Seattle. Another Mri and this time spots showed on my brain. As for my monster lesion at C2, she felt I have a brain, body disconnect and may change as I age. ( I personally say screw that, there will be the right medication or a cure first )

So I went home to grieve and then start what I consider the worst 4 months of my life, taking rebif. OMG It was pure hell. I have been offered tysabri which I declined, but I await the gilenya data after its been out a for a little bit longer.

I take a bucket of medication and right now I am doing well. I walk into walls and forget my words, loose concentration, coordination, and sometimes wake up in excruciating pain, but I am okay!

Overall, I am in love and happy to be alive. I am a woman who has m.s., m.s. does not have me!

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