December 26, 2008 at 2:29 pm

Hello Mark,

Like everyone else here, I am sorry that you are having such a rough time.

Unfortunately for you, your disease is not one that we have much experience with. One of the problems with acronyms is that they are not precise. CIP is an acronym with at least two different meanings. One is for, as you already know, critical illness polyneuropathy. The other is for chronic inflammatory polyradiculoneuropathy. The second meaning is now more generally known as chronic inflammatory demyelinating polyneuropathy (in the US, the radiculo portion is usually left out, but implied; in the UK, it is often explicitly included). From what Kelly posted, your disease is largely axonal, whereas for most of us, the disease affects predominately the myelin sheath around the axons and then secondarily the axons.

That said, please feel free to be part of us. Much of what you will deal with is what we have dealt with and I am sure we can provide understanding and support.

Godspeed in your recovery,