I have seen him. He’s fine in that he understands the disease and will try a bunch of drugs for you if that’s what you want to do, or the point that you are at. He’s also a good doctor to have on your side for disability claims or SSDI applications. He’ll write good letters.
But, I found his manner to be a bit paternalistic, and I basically disagreed with his approach.. the stimulants he wanted to try (why would anyone think stimulants help our incredibly sensitive to stimulation nervous systems?).
He’s a proponent of exercise, but in a very safe way. Ie. Walking the minimum you can (a minute or whatever it might be) and increase by 15 seconds a week. He fully believes this works to expand the energy envelope. Having tried it multiple times, it didn’t work for me, although I think it is worth trying.
He’s very anti antivirals, so if you want to try those, go to Levine instead.
Something that grated on me.. I was taking part in an MRI study he was running, and he tried to persuade me to do a spinal tap. He was very forceful in trying to persuade me, saying all patients should do whatever they can to contribute to science. I told him I was living alone in a walk up apartment and couldn’t risk getting worse — that made no difference. (This is what I find w doctors who are also researchers — they sometimes put their research before their patients). The technician who ran the study at the hospital said absolutely do not do the spinal tap, when I told her my circumstances, and she was shocked that he had pushed for it. (Spinal taps are mostly safe, but there is risk of a spinal leak which is very disabling in itself)
So, I guess my advice would be to see him if you need a doc on your side, but be skeptical and make your own choices about what is right for you.
Oh, one last note — his office is quite a walk down corridors to get to, if you have a low step per day limit.
