Quote:
Originally Posted by suev
Welcome! Glad you finally have a dx, but sorry that it is CMS. I know (from reading Annie's posts) that CMS and LEMs are somewhat different than 'regular' MG. But don't know much more than that.
What treatment have they recommended for you?
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I am taking albuterol (4mg) 3x a day. It helps, but it's definitely not a miracle or cure. As of January 1, MY insurance reclassified albuterol as a Tier 4 medication and tried to charge me close to $600 for a 90-day refill. Fortunately, my doctor went above and beyond and found that Walmart would give me a 90-day supply for $12 (it turned out to be $15, but so what!!).
I was taking COQ10 as well, which I think helped a lot, but my Primary Care doctor told me to stop it because my liver enzymes were elevated (more than usual) and despite stopping Lipitor, they continue to rise.
I've noticed a decline in my energy and stamina since stopping the COQ10. I hope I can convince him to let me start it again IF we can determine it's not involved in the liver enzyme issue.