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!
@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.
Emily Mallegni·
Мама дочки-младенца
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!
Angel·
Мама двоих (младенец)
@emily526, hey nice to meet someone else who has it. It's an unfortunate situation for us. 😔 I was diagnosed about three years ago.
Emily Mallegni·
Мама дочки-младенца
@92angel It is unfortunate and a struggle because most people, even doctors, don't really know what it is.
Angel·
Мама двоих (младенец)
@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.
Emily Mallegni·
Мама дочки-младенца
@92angel Same here. I stopped taking the diamox. The negatives outweighed the benefits for me.