St Louis, MO Als Clinc

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whimsy_1971

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Is there anyone on here that has attended the St Louis Als clinic ,and if so what is your option. Do you like it?

My husband and I are going to start going there and just wanted some input.

Thanks in advance.
 

whimsy_1971

Active member
Joined
Jan 13, 2008
Messages
77
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US
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Illinois
City
Noble
Is there anyone on here that has attended the St Louis Als clinic ,and if so what is your opinion. Do you like it?

My husband and I are going to start going there and just wanted some input.

Thanks in advance.

sorry for miss spelling
 

ilgal

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PALS
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00/2001
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Somewhere
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.
 

jpsugar123

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Slu

My mom is headed to the SLU clinic in July. I don't want to put too much personal stuff on here about the docs and my honest to God opinions of them but I did like a particular doc at Barnes. He was extremely thorough and he did NOT tell us my mom had ALS. He was thinking it was something immune mediated. SLU told my mom when she was in her room alone one day and didn't bother to tell us until the next day. The doc couldn't even tell her, the doc sent in the "entourage" I call them, to tell her. I thought that that was lousy. Let me know what happens at the SLU clinic if that's where you're going. [email protected]
Thanks!
Jessica
 
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