The whole process of getting a diagnosis after my first symptoms took more as 30 years. It is important to see the right neurologists. You might be at one of the best hospitals, but that won’t mean anything when you don’t see that neuromuscular neurologist with a special interest in Periodic Paralysis.

I am for example active member of the following Facebook groups: Hypokalemic Periodic Paralysis Network, Periodic Paralysis Network Support Group, Periodic Paralysis NUT-works and there are quite a few other ones. Each group is slightly different.