Update on hubby…

Hello All!

Well, we had the nerve tests done. Shocks with paddles and needles in the muscles. Wow! What a thing! Husband said needle in the shin muscle was the most painful thing he had ever been through. He usually has a high tolerance for pain. I don’t want to scare anyone who has yet to go through it because otherwise it wasn’t bad at all… mostly just uncomfortable. The neurologist must have been close to a nerve or something.

The neuro said that his protein levels in the spinal fluid was 48…only two higher than normal, which is 46. She still thinks it is mild gbs even though this it is not as elevated as what she usually sees. Has anyone else had lower protein levels? It seems like everyone else is up in the 90’s somewhere.

Someone here said that if you are going to get this disease, Milwaukee is the best place to have it. We are lucky enough to live there, so the neuro is sending him to Froedert hospital where they have a neuromuscular department. They will evaluate him further, check for antibodies in his blood and consider IVIG.

He is slowly weaning off the prednisone.. he has about one week left. I guess we will see where we are at once he is experiencing the full symptoms. Right now the double vision is almost gone, and he is having an easier time walking, but still not great. When he went off the pred the first time, this all came back. Good news is that he is stabilizing, and it will be a slow recovery, but at least recovery is in our future. She has ruled out MS, myasthenia gravis and saciodocis and such. She also found he has terrible carpel tunnel in both wrists, which he has suspected for years because of his job. I guess that’s a seperate thing we will have to deal with.

I told my husband that everyone here says gbs stands for Get Better Slowly. This made him laugh because he is finding this to be true! Thank you all for the support. Best of luck to everyone affected by this crazy disease… caretakers included! I will let you know how it goes at Froedert.

-Jen