Do you mean the clinic at St. Louis U (affiliated with ALS Association) or at Barnes Jewish (affiliated with MDA)? I go to the one at Barnes and would NOT recommend it. I've read posts on here about patients' experiences at their clinics, info and referrals they've received, etc. and I feel I've gotten none of that. I was told my diagnosis over the phone about 2 weeks after my first brief visit. At my next 2 visits The doctor ran in followed by his entourage of residents and did muscle strength measurements and that seems all he was interested in. I've had to ask, based on info from forums, about other things. I asked and got a referral for speech device eval and a referral for a hand orthotic device, but if I hadn't asked I'm sure neither would be mentioned. I asked whether exercise would be good for me and if so what exercises. They had a physical therapist come in to talk with me who basically said, "if you don't wear yourself out it's okay to exercise." No showing me exercises or anything like that. My next appointment is in 6 months.
If you go to SLU and like it let me know and maybe I'll change.
