Anyone been to Mayo Clinic in MN?

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Tony292

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So I saw neurologist #7 (in two years) yesterday and she said I definitely have MND and probably ALS, but that she wanted to refer me to the Mayo clinic in MN to be sure.

Has anyone had experience being referred there? any insight would be appreciated. it is an 8 hour drive which will totally wipe me out, but aside from that I dont know what to expect. if it a multi-day affair? I would think for them to really check me they would have to do an EMG and possibly another test or two. I have already been checked for nearly everything in the differential.
 
>but that she wanted to refer me to the Mayo clinic in MN to be sure.

great plan, great rep, lots of ALS action there ...
 
No personal experience but I seem to remember hearing they want to do their own testing and it was a multiday visit. Let us know how it goes.
 
Considering the long drive, Tony, if I were you I'd call the ALS team at Mayo (they are very patient friendly) and ask lots of questions before you go. They'll look at all the tests you've already taken, especially your previous EMGs. Mayo is known for having a "patient centered" practice where you stay in one room and they'll have specialists visit you to answer your questions. We had a very positive experience with Mayo in Jacksonville.

We booked a nearby hotel to make the trip easier.

Bring all your records, or at least ensure they have received all the records they can use. In our case, we brought all our records, and discovered that they had already obtained them before we arrived! Ask about that before you go.

In our case, they did not repeat any tests that we had already taken.
 
Thanks! I have all of my medical records on digits, to include MRI imagery. Some tests I would rather not do again, such as lumbar puncture! I will certainly ask for another EMG, as my last two were left side only, and now I have symptoms spreading to my right side, and the more signs they find the easier it will be to arrive at a diagnosis. I am excited to be going to the gold standard clinic finally. It has been a very long two years, and I feel worse recently with progression speeding up.
 
We went to the mayo mn for a 3rd opinion! The neurologist was the most thorough of anyone we saw including our current als center in mpls. You are right, they will want to do their own emg, not pleasant but again thorough!

We felt like we were in Disneyland. It's a well mapped out maze with tunnels and skyways from hotel to clinic. Then waiting only briefly as they call your name from the barrage of souls each waiting their turn to be seen by grand specialists! For a moment you feel lost in the crowd and then quickly realize they have reviewed your records, they are personal when visiting with the docs and they will not let you fall into a roller coaster of unknowns but will help sort out the diagnosis!

Hope everything goes well! One side note--at the time my pals had some trouble with his legs so we had to stop in the tunnel maze before we actually got to our destination! At the time, 5 yrs ago he did not want a ride in a manual wheelchair--of course he would have saved a lot of energy if he had chosen that mode of transportation!
 
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