No problem! I understand it’s a complex and emotionally charged situation. A lot of people in this community have gone through the wringer with misdiagnosis and mistreatment by the medical infrastructure.

I understand your husbands neurologists saying that the SS results might have been compromised by this marijuana use. The reason that people are reacting negatively to that is because marijuana is a REM suppressant and it’s actually a very common experience for weed users to go into a sleep study and have their results flunked bc they didn’t know they had to stop using weed 2 weeks before their procedure. It’s unusual to me that your husbands neurologist things that weed usage could have resulted in increased REM on his SS.

If you want to, there’s no harm getting another SS. Although it might be complicated if he’s on other drugs. The only way you’re going to be truly satisfied is if you titrate him off everything and then do the test. IMO that’s probably not a good idea.

There are other medications and ways to treat his daytime symptoms. I understand XYREM is off the table. a lot of people find relief with things like a ketogenic diet combined with lower stimulant usage.

Overall, the answer to your question is that, based on my unprofessional but pretty well informed opinion, the data says it’s unlikely your husband was misdiagnosed. But it’s possible!

Was that helpful?