The story of Andrea
I have had pain and weakness in my back and legs for many years. I had back surgery twice and although my back pain lessened, the weakness progressed. Gradually my balance and ability to do things like climb stairs or get in and out of a car has gotten much worse.
After seeing 5 different neurologists who told me everything from neuropathy to a functional illness, I was sent to a major medical center with a neurologist who was well known for her diagnostic skill. She did another EMG, examined me for nearly an hour and ordered many blood tests and MRI exams. But the bottom line was that she was fairly sure I had a motor Neurone disease called primary lateral sclerosis. The other tests were more to rule out the other possibilities.
It is both relieving and disturbing to finally get a diagnosis. Having a name and therefore support community is good. Having an incurable progressive disease is not so good.
I have new AFOs called Neuro-Swings which provide me with a level of stability. Hoping to find whatever I can that may keep me moving forward. Welcome to my world.