My doc sounded like after the first 5 outpatient IVIG round (5 in 5 days), since I continued to show more weakness (which showed true with EMG and Nerve Conduction tests) he may not do any more IVIG treatments. Isn't this something that takes more than just one round?
He's talking of putting me in the hospital with plasma exchange if i do get even worse. Hmmm ... I thought it would be worth waiting about 3 weeks (length I was told IVIG lasts) and then getting another round, and going once a month after that.
Please tell me what you know about healing and IVIG, etc...
I am soooo afraid Im going to be stuck in pain and with severe weakness forever.
Can GBS autoimmune nerve attacks ever just stop on their own?????? HELP!!!
If you need to go in the hospital, you need to go into the hospital. You already have the history backing you up so there shouldn't be head scratching as to why your there. The longer/worse you let it get, the longer your recovery time is going to be.
My wife had lots of pain, it would go from a 2or3 to a 12 in about 5 minutes. Lots of drugs to take, it will help but not get rid of the pain. They sent us a complete package With this if they can get rid of 50% of your pain that is a success. Lots of info in the booklets that you can send for at www.gobs-cidp.org. They sent us a complete package for free. This had one for the doctors , one for the physical therapist and one for us. I read them all and even the doctors and therapist did to. You will get a small booklet that is called the communicator per quarter it has lots of new info. Hope this helps I should have put this into my other posts as well.
A typical IVIG treatment is 5 doses over 5 days. That is what I received and when we questioned whether I should have more they explained that there is no evidence that there is any benefit to receiving more. He said that the important indicator is whether you continue to improve after treatment or not. They told me that if I didn't respond to the IVIG that it would be best to try plasmapheresis next. I responded to IVIG. I started to have small improvements after my second treatment and continued to get better after each treatment and after the treatments stopped. If you are not responding then go get the other treatment. The sooner that you get the treatment that works for you, the less damage you'll need to repair once your recovery begins!