You need maintenance….

March 16, 2010 at 10:12 pm

Hi there. You need maintenance IVIG. Do you have someone to advocate for you? There should be an ombudsman to help you or a patient advocate. Any chance you can change docs? My daughter is 34 and has plasma exchange (PE) once every 3 weeks. She did not respond to IVIG, still cannot walk after 2 years, without Afo’s and a walker and that’s very difficult. She, too, lost the use of her hands and arms and for a while her diaphragm. The breathing problem came AFTER the IVIG, so she was given PE. When we left the hospital after 2 months we did not understand that the PE should be ongoing. She had several sessions of 5, then a few 3’s, one more 5 in 11/09 and back on 1 x 3 weeks. You need more help, I think you will continue to relapse. PLEASE LOOK FOR A OMBUDSMAN OR A PATIENT ADVOCATE. Promise! I hope someone is caring for you the way I have been for my daughter.