Stephanie

Lisa – from reading your challenges I realize there may be significant differences between the way we obtain care in the U.S. and Canada.  I return to my recommendation that you contact the Mayo Clinic in Rochester, MN or an ALS certified center to obtain a consultation and understand the cost to do so.  Advocate for your care and make informed m…[Read more]

Lisa.  My dad definitely has extensive wasting in his hands and weakness as described with split hand sign.  I tracked the hand wasting and weakness as one of the symptoms he was having out of diligence when we were trying to find out what was wrong with him.  None of the neuros we saw mentioned split hand sign but they did consider his hand wa…[Read more]

Hey Lisa.  I know for certain that Mayo is open to people from every country.  They have an excellent team who probably can answer insurance questions for you in advance as they regularly care for non-US patients.  Another step you might take that I see others recommended is to make an appointment with an ALS Association Certified Treatment Ce…[Read more]

Hi Lisa.  I’m sorry to hear about your health and your frustration.  I’m not an expert.  My 76-yr-old father was diagnosed in June with late-stage ALS.  It took us 3 years to get a diagnosis.  We spent so much time and have had a significant amount of anxiety about the root problem that resulted in his symptoms and caused us to see neur…[Read more]

We saw a number of doctors at Mayo Clinic.  Dr. Eric Sorenson is the neurologist we saw who diagnosed ALS (https://www.mayoclinic.org/biographies/sorenson-eric-j-m-d/bio-20054094).  Applying was much simpler and less intimidating than I expected.  I sent in an online request for appointment (https://www.mayoclinic.org/appointments).  They fol…[Read more]

Hi Michael.  I’ve been working with my dad to get a diagnosis for what we understand is respiratory onset ALS, which we received at the Mayo Clinic in Rochester MN in July this year.  The EMG at Mayo didn’t reveal anything related to ALS but I understand from the neurologist that this isn’t unusual as there are very specific things that have to b…[Read more]

My father was diagnosed at the Mayo Clinic with late-stage, respiratory onset ALS three weeks ago (July 2020).  We’ve been searching for answers, seeing many doctors, and having numerous diagnostic appointments for 3 years trying to understand the cause of his rapidly declining health (breathing problems, significant weight loss, weakness in his…[Read more]