Marianne Has ALS

What is ALS? Great question, here is a short and depressing video to explain it:

About 9 months ago my left hand began to spasam. My thumb and first finger would randomly jerk up and down, this was strange but not alarming. Next, my fingers began to lock, usually one at a time, and almost always after some kind of stretch or strain. My shoulder and neck hurt…and so I went to the doctor. A few x-rays showed a bit of arthritus, nothing to cause spasms, numbness, or pain. Two months of physical therapy found no improvement and an MRI was ordered on my neck. Again some arthritus and some mild stenosis was found. I was told to go to ortho. Walking in to see the doctor my worst case scenario was spinal surgery ….something that terrified me.

The good news – my spine looks amazing. The bad news – during the appointment the doctor said he had found some neurological concerns and set me up with the neurologist the next day. Thursday February 1st we left knowing something was wrong…really really wrong.

Friday, February 2nd I had an EMG. I was shocked and poked all up and down my left side. By the end of my appointment the neurologist told me she was 90% sure I had ALS. Blood tests to rule out other problems were ordered. Confirmation of the diagnosis happened on 2/7. In less than a week I went from a scary surgery to a terminal illness. To say I’m still in shock is an understatement. There is a lot of damage in my left hand, arm, and some in my left leg.

What now? Another great question! I mean big picture we all know where this will end, but in the meantime I’m here to keep y’all filled in (spoiler alert there will be a lot of ugly crying….but there will also be a lot of joy, happiness, and love).