[Mike]

Hi Jerry, See below from website.

Best in Texas, Nationally Ranked

UT Southwestern Medical Center is ranked the No. 1 hospital in Texas for neurology and neurosurgery – and is among the nation’s top 20 hospitals for neurological care – according to U.S. News & World Report

It would appear that your are with a very high quality medical facility. On their website it specifically says that ALS is one of the areas they treat.

Giving you a right or wrong is way above my pay grade. I wish you the best on your journey.

Mike

[Mike]

Hi Carol,  my ALS started as you described.  I had been doing regular workouts three days a week for two years when I found that I couldn’t do my regular pace on the treadmill and instead of building muscle I was actually getting weaker as witnessed by having to reduce the weights for my arm pulls. After several failed medical appointments , I contacted the Mayo Clinic in Rochester for an appointment.   I went through a battery of tests , but it was the EMG that confirmed the diagnosis.  If ALS is confirmed, I hope your able to make an ALS Clinic contact. as it brings your current needs snd future needs under one roof.  Lastly, I want to thank you for your positive words regarding helping others with their journey. Blessings, Mike

[Mike]

Hi Lisa,  I can understand your frustration dealing with doctors who are not be part of an ALS Clinic.  My ALS started as a pulmonary problem as a result of an out of order diaphragm. I currently use a non invasive portable ventilator 24/7.  I’m blessed to be part of a clinic setting which I visit in person or by telehealth every three months.  I have a Neurologist and Pulmonolgist  as well as other specialists to call upon as necessary.  The ability to have someone to email or visit has allowed me to be more relaxed about living with ALS.  Perhaps someone at a state or regional  MS/ ALS  level could help guide you on bringing your health needs under one roof.  Blessings, Mike

[Mike]

Hi Pepper,  I use a fall sensor medical device, which is worn around my neck and can be worn in the shower and also can be activated with a button. What I like best is, it’s a GPS device which immediately identifies where I am whether home or away.  When I signed up I gave the company contact information. I’m sure, since you are unable to speak that your instructions could be to automatically call 911 as well as your support team. You do not need a cell phone to use this device. It’s programmed to use either Verizon or AT&T.  Blessings, Mike

[Mike]

Hi Anne, I was diagnosed with Sporadic ALS at the Mayo Clinic. The tests were conducted over four days and I believe the EMG test was the conclusive test that verified my ALS.  I did not have any NuroPsych tests then nor have  I had any since entering my ALS Clinic program.  This is not to suggest that the test isn’t worth while. ALS is so unique to each person that what my doctors do for me may not be necessary for you and vise versa.  The question you asked about declining the test is a good one and I’d suggest you discuss this with the doctor as well as a trusted family member or friend.
Mike