@92angel Same here. I stopped taking the diamox. The negatives outweighed the benefits for me.

@emily526, yes I have been to two neurologist and neither act like they are well educated on the issue. The only advice they give me is weight loss and I'm on diamox.

@92angel It is unfortunate and a struggle because most people, even doctors, don't really know what it is.

@emily526, hey nice to meet someone else who has it. It's an unfortunate situation for us. 😔 I was diagnosed about three years ago.

I was diagnosed with this 5 years ago. Been working on keeping it under control since then. I've never ever met anyone with this as well or who even knew what it was. I hope you're feeling good. You're not alone!