Dawn Kevies mom;gabrielle;emma

June 26, 2008 at 11:36 pm

Wow!!!! What a story. I sure hope you (Emma) are not with the same doctor as before. We as most of you know are also at the spot of getting a second opinion. Have not an appointment at Cleveland Clinic since we moved from Ohio to Tn. 3 years ago we decided this would be better for us. I would like to send records to John Hopkins also but not sure it is going to happen. One thing I have learned from this thread about the kind of ivig also does make a difference. My husband has had the initial dose of ivig , then 6 weeks later I believe I requested Gammaguard. I am going to look it us tomorrow as the infusion place did give me a sheet on it. This last time (yesterday the 25th and also the 24th)
he had Octogram or something like that . Wondering if that is why he is not feeling to good yesterday and today. Whiped out and achy he said. He has been tired right along but I could tell he felt worse this time. Thanks for the info from all of you. And Emma I pray you are getting better.