Wash U (St. Louis)

[dp1969]

I am a 40 yr old male; diagnosed with ALS last month (June 2010). I have had 3 EMG's (last in January, which was "dirty") and mutiple MRI's, blood work, etc. My original diagnosis was from Univ. of Colorado. Today I had a follow up appt by a neuro outside the Univ. of Colorado system. His conclusion was identical...ALS. Next step [locally] is to see a pulmonologist and start at the MDA clinic.

Based on discussions with someone I truly respect on this forum, I am considering going to Mayo for a third/final diagnosis [please don't tell me not to waste the time/money...this is something I need to do]. The Neuro I met with today suggested Wash U as an alternative. The physicians there are mostly Hopkins trained. Benefits to me are I have family in the area, an aunt that actually works in the Wash U med center, and the neuro I saw today will refer me and can get me in more quickly.

Has anyone been seen at Wash U? How was the experience?

Any input is appreciated.

Thanks,

Dan

 

[Zaphoon]

I've been seen at Wash U after having been referred by a local neuro for a 2nd opinion. My local doc suspected PLS which was quickly pooh-pooh'd by Wash U. Their reasoning for this was that it was just too early in the diagnostic process to lean in that direction.

By this time, I already had 1 emg/ncv, a brain mri and a lot of bloodwork. Wash U saw me 3 times, did their own emg/ncv with more bloodwork and wound up shrugging their shoulders. If they are not sold on something, they'll tell you.

Having said this, after seeing 2 more neuros, my diagnosis is still pending as a differential of PLS with a big question mark behind it. I suspect it will change to something like BFCS, PNH or maybe a pinched nerve that has alluded detection on my spinal mri's.

One very good thing about the staff at Wash U is that no matter what some other doctor has given as a diagnosis, they will not readily second it until they have done their own testing and are absolutely certain you meet the criteria. This has been my experience.