Hi,
I just wanted to comment on going to Houston for a non-ALS diagnosis.
I went there last summer for to be evaluated for what was likely a pure upper motor neuron disorder. I was very happy with the process. Here's what happened:
I did a long intake over the phone the night before I was admitted.
The first day, they did an extensive neurological exam, standard bloodwork, and an EMG. My EMG wasn't very extensive (both legs and an arm) because it was pretty clear to the doctor doing the test that I did not have lower motor neuron damage (upper motor neuron symptoms don't show on an EMG).
Then Dr. Appel and his team of people (med students, residents, etc) came and met with me and told me that they felt my preliminary diagnosis was probably hereditary spastic paraplegia.
During that meeting, they decided what other tests I needed, and who else I needed to consult with.
He told me that he wanted to go ahead and do a spinal tap to make sure that I did not really have MS (I'm female, in my 30s, which is prime MS time). They also decided to do a breathing test, but only because I told them I had been experiencing some shortness of breath. Otherwise, I don't think they would have done it. I met with the physical therapist and the respiratory therapist (for the breathing test) but did not meet with any of the other people like occupational therapy, nutrition, etc.
I was there for a full day the first day, half day the second, and half day the third. Dr. Appel and his team met with me each day for as long as I needed to get all of my questions answered.
I felt like all of the tests they did were appropriate, and they did not have me do anything just because it ticked a box on their procedure list.
And not to speak for Max, but I know that he has said in the past that his diagnosis was clear by "lunchtime of the the first day" so the rest of his visit was very different then the rest of mine. I did not meet with all of the people that Max did since my diagnosis didn't warrant it.
I would recommend going. Good luck on finding answers. I know how frustrating it is to have a random disorder that nobody seems to know of or anything about.
Sincerely,
--Suzannah
