My Mom was officially diagnosed with bulbar onset ALS in April 2018 after 18 months that included brain surgery and many other tests to rule out other issues.
During those 18 months, there were drugs she might have had access to that could have made a difference for her until she was officially diagnosed however without the “DIAGNOSIS” she was not given these prescriptions; they weren’t covered by insurance and were paid for out of pocket when she was finally allowed to take them. If it’s out of pocket, why not give these drugs to the patient? They wouldn’t have hurt her in any way and just might have helped to stave off the ghastly progression of the disease. She passed away in October 2018. So much needs to change in regard to ALS treatment protocols.