Hi,

I'm a 41 yo in CO. A short timeline:

Jan 05 - Symtom onset (thumb weakness) followed by hand and arm atrophy.
Aug 05 - Dx'ed with ALS Aug 05 by local Neuro (1).
MRI found herniated C5-6 with root nerve & cord compression which, at the time, was considered the source of symtoms.
Sep 05 - UCDHSC ALS Neuro specialist (2) un-Dx'ed ALS but recommended ACDF.
Dec 05 - Surgery 5-6 ACDF
July 06 - Followup with (2) but would not Dx.
Aug 06 - Dx'ed with ALS by another local Neuro (3).
Left hand & arm severely atrophied, now I have leg weakness.

To date, I've received no direction, suggestions, recommendations, treatment, etc. from 3 Neuro's. I'm frustrated and don't know what to do next.

I'm going to try to see E. Peter Bosch, Mayo Clinic Scottsdale. Any other suggestions?

Thanks, Don

http://www.alsa.org/community/default.cfm?CFID=454511&CFTOKEN=29161751


ck ths site....if not pleased please repost. know that a referral will help once u can get your docs to say ok.

Try hard for the Mayo Clinic!! I just returned yesterday from Mayo in Jacksonville, Fl.
They were great! Well organized, and very through. It took two days, but they checked from stem to stern and took good care of me. They know all about ALS. You may not like what they have to say, but its good to find someone who knows what their doing.
Good luck, Bob

My dad went to the Mayo Clinic in AZ. I hope they treat you better than they did him. They basically told him to get his will in order and do the things he has always wanted. No sympathy and not much information about ALS or the bulbar form that dad has. My parents left feeling dumbfounded and not too sure where to go from there.
Dana

Hi Dana,
This is very interesting. We have been considering going to Mayo in AZ for a 3rd opinion with Bosch. He was highly recommended by the guy who gave us 2nd opinion: Hans Neville at CU in Denver (maybe a self-fulfilling prophesy if we go there though, since they are pretty tight-knit community).

Anyway, our insurance doesn't cover Mayo, so we would have to either change insurance (open enrollment is at end of the year for us), or pay for it out of pocket.

Did they re-run all your Dad's tests at Mayo? (Neville did not re-run any, just looked at results of original tests)

Did your dad see Bosch? Or another neuro?

What procedure did they use to evaluate your dad?

Sorry if these questions are too personal, but we are struggling about how far we go and how much $$ we invest in another opinion if we are just going to get a neuro who will parrot the dx given by the 1st 2 neuros.

Thanks for any info you feel comfortable providing.
Lisa

OK guys here's my opinion. Everytime you see a new Neuro you should get a new EMG and Nerve Conduction study. How else is there going to be any different conclusion? I was the victim of operator error once with a set of tests. I have since gotten a different set of tests each time I got another opinion (5). It is not a pleasant experience but how can a doctor give you a possible different opinion looking at the same tests as the other guy?