It was quiet in our house Christmas morning. We opened presents and loved on each other more than ever. For New Years we went to my aunt and uncles for a few nights. My mom could barely make it up their stairs to bed at night. We had to help her walk from room to room by letting her hold our arm for support.
Christmas 2018 came and went. And with it, any good feelings we had of mom possibly getting better without intervention.
We saw doctor after doctor. Specialist upon specialist. The neurologists are where we stopped. 3 neurologists in fact.
First were tests. So many tests.
And then possible diagnosis after possible diagnosis. Everyone was sure it was MS. “Definitely MS” the doctors said, but the tests confirmed it was NOT MS. Then it was clearly brain cancer. Then “It has to be cancer hiding somewhere in your body” all of the doctors were sure. But all of the tests confirmed it was NOT cancer of any kind. Then it was an autoimmune disease, then definitely Lyme disease, then definitely an infection in your brain, definitely, definitely, definitely.
I knew what is was. I am not a doctor. Or anyone in the medical field. But I KNEW.
I asked both neurologists “could this possibly be ALS?”. The answer was always no. “No way, ALS is not this rapid. This is not what ALS looks like. This is not ALS”.
Then came the 3 month long hospital stay.