Hi All: I was just diagnosed last week and am going for my first IVIG next week. My neurologist here referred me to Washington University in St. Louis, where I will have my first infusion. WU will work with my neuro here once I am on a treatment plan. So, if I tolerate IVIG and respond well, I will continue treatment here in Michigan. I have so many questions! How long before I know the IVIG is the right treatment for me? Does anyone know of "preferred or good" IVIG infusion centers in Michigan. I live near Rochester, MI. Do I need to be concerned about BCBSM - PPO covering treatment? Is there a local support group? Would love to hear about successes with IVIG. I've read that go into treatment well hydrated, take benydril, and an aspirin before treatment. Is there anything else I should do to prepare my body for IVIG? Feel free to message me privately. Evelyn
It can take six to twelve treatments and I can't remember how many I've had, but with the right combination of meds. it does get better. I've lost 34lbs. and have muscle wasting in my left arm and hand, with extreme pain in my right leg. Some days I sleep for eighteen hours, but exercise as much as you can (but don't over do it). I know this sounds like doom and gloom but it does get better. Gary Check out this link: http://www.socialstyrelsen.se/rarediseases/cidp