I am in the same spot. A neurosurgeon observed my husband for a few minutes today based on observations of his nurse and is sending my husband to a neurologist for the confirming tests and diagnosis. I have been telling his doctors for over a year that he is stooped over, losing his balance, bp is getting lower and lower, face is non expressive, walks like Frankenstein, and they have all missed these clues. Granted he had other health issues they were focusing on like afib, open heart surgery, kidney stones, water in chest cavity, and lately extreme neck pain with headaches . I feel like we are trapped in a nightmare that isn’t going to end well!