plasma pheresis was a miracle for me

Dear Amy,

It sounds like you guys have been through the worst of it…I pray that’s the case!

I’ve had 106 plasma pheresis. I would have never believed I could make it through that many, but somehow I did. I tried I.V.I.G., but it didn’t work as well.

I also take Cellcept (not Imuran – it will make your hair fall out) and Norco for pain. Another doc has me on vitamin b12 shots to grow back my nerves and help with fatigue.

Rest will be the number one thing that helps your loved one. Also, no stress. Stress is a terrible setback for anyone with GBS/CIDP.

Exercise (lots of stretching, light weights, etc.) is also very helpful.

Keep checking the website out. All of us can relate and we’re here to help in anyway we can!

In closing, the best thing you can do, is be YOU. You will love him and make him feel special when he feels down.You will give him hope when there seems there is no hope left. You will listen when he needs to talk about his pain (both physically and mentally). You will help others understand his situation. Your thoughtfulness will never be forgotten.:p