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Wilson2009-I found the webinar informative and it gave me a little more hope that our state will prioritize ALS in the upcoming phases. It seems that some states are going strictly by the CDC's guidelines on which diseases to prioritize (which they don't specifically mention neuromuscular...

Lisa g- Honestly, we let my husband's GP, nurse, and pharmacy handle it for us. But from what I understood it was through an appeals process. Just a form they and the pharmacy had to fill out for us to get insurance to approve it. So it could be the same letter your neurologist was talking...

We were able to get my husband's general practitioner to write a script for this (denied by 2 neurologists we asked). It took some work after initially being denied, but my insurance eventually approved it and is covering it with a $6 co-pay. My husband is not currently on Medicare and is on...

Hi Laurie, This is fantastic advice and really well put. I can't tell you how meaningful it was to me. What you are saying makes sense, especially about the second opinion making another home for denial. In my mind, we have been dealing with this diagnosis for the last 6 weeks, but perhaps...

Hi everyone, this is my first post on this forum. I'm sorry that this is the way I had to meet all of you amazing people, but I am grateful to have a place to ask for advice! My husband posted in the Newly Diagnosed section a little over a month ago. We have an 18 month old girl and we are...