My husband was diagnosed with ALS in 2006. His progression is slow. We recently moved and had to deal with finding new doctor. My fustration is dealing with idiots because he can still move his arms and talk etc. they want him to go thru the same battery of tests he has been thru many times before. He has a very hard time breathing at night and needs a cpap or bipap machine they dont know which After 3 sleep studies?????????? I know alot of doctors are not able to read and understand the results and many times try to say Sleep apnea is not part of ALS. It is. I finally viewed the results of the studies and without a medical degree could understand what he needs. It is spelled out in the report that it caused from a central nrevous system disease. How can a director of an MDA clinic be so uneducated on the disease and it's affects on each person. These doctors should look at my husband and want to study the slow progression.
Instead of depressing him and ordering test we know the results of!
I am so mad right now, I had to write this.
Doctors Dont Know whats Best All of the Time