Mayo told me I had ALS after a 15 minute exam

[CV14]

I recently returned from Mayo Clinic where I was referred by my neurologist because of left hand thumb weakness and atrphy.  I received Carpal Tunnel surgery in Feb, thinking this was the problem.  I was under the impression that Mayo would try and find anything and everything through testing and not pigeon  hole me into ALS immediately.  I am going to Northwestern for a second opinion.  I am scared to death and so is my family.  I never had a spinal tape or nerve biopsy, I was never given the results of some blood work or the brain mri they did.  My question is if this is so rare why would they make such a quick diagnosis?  And I am of course thinking that the disease is progressing by the minute, if this is ALS is it normal to think things are moving super fast? One last question the muscle twitches I am experiencing are occuring more often but sporadic in location.  Thanks, my appointment next week seems a long way off and I am heartbroken.

[Londres70]

Are you serious?  I would get a second opinion too.  ALS is something that is considered rare and I don't know how someone could diagnose you in 15 minutes with it.  I don't know too much about ALS but I do know some time and extensive testing should be completed prior to making a diagnosis like that.  My father's friend had it; his porgressed quickly but from the little I know it can progress quickly or slowly.  

Secondly, they didn't tell you the results of any of your blood work, MRI of the brain, etc.? Strange.  You can always requests copies of the results to take with you to Northwestern.
I don't know how fast you will get them.  Also, you can check with the Neurologist that referred you Mayo to see if he/she got a copy of your test results that he can give to you.  

I am sure your nerves are shot about all this; HANG IN THERE.  Sounds like you have a family that supports you.  

Hopefully, it will turn out not to be ALS.  It is always good to get second opinion when a rare diagnosis is made even if Mayo had spent hours testing you.    

Keep us posted.

[ggreg]

About all I can comment about is concerning what records the Mayo Clinic might have had when they finally saw you and did their 15-minute exam.  Normally, if you are referred to a place like that by a neurologist, your neuro had in his possession all sorts of records, tests, any pictures and reports of scans, a letter with lists of his thoughts and conclusions, and also your history.  Those are ROUTINELY forwarded to your referral doc, which in your case is the Mayo Clinic.  Therefore the Mayo people already knew a whole lot about you before they first walked in the room and met you.  Of course, if your neuro had NO information to forward, disregard what I have said, and I'm glad you're getting a second opinion, because if nothing else, you should require Northwestern to not only check you out, but ALSO to EXPLAIN how it is they arrived at whatever diagnosis they come up with, so you won't be left hanging the way you were.