Guest guest Posted October 19, 2009 Report Share Posted October 19, 2009 ________________________________ Has anyone on this list had any experience with IVIG? My father was diagnosed with ALS at the beginning of October. He was originally diagnosed at UCLA and then again at an ALS Center of Excellence in Phoenix. Although the doctors in Phoenix were pretty sure the diagnosis was ALS, there were waiting on CSF tests to officially confirm it. Today, we heard that the CSF tests indicated an autoimmune disorder of some kind and further tests were needed. They also recommended IVIG. I'm waiting to hear exactly what tests were abnormal. I would appreciate any input into the IVIG experience. Thank you. Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2009 Report Share Posted October 19, 2009 Has he been tested for Lyme Disease? The expensive Western blot test at IGenix in Palo Alto? Sent via BlackBerry by AT & T IVIG ________________________________ Has anyone on this list had any experience with IVIG? My father was diagnosed with ALS at the beginning of October. He was originally diagnosed at UCLA and then again at an ALS Center of Excellence in Phoenix. Although the doctors in Phoenix were pretty sure the diagnosis was ALS, there were waiting on CSF tests to officially confirm it. Today, we heard that the CSF tests indicated an autoimmune disorder of some kind and further tests were needed. They also recommended IVIG. I'm waiting to hear exactly what tests were abnormal. I would appreciate any input into the IVIG experience. Thank you. Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 It was equivocal. We're waiting for additional blood work to be done. After reviewing his test results, I have a feeling we're probably looking at MS. I sent a list of Dr. G's test to my mom and the doctors at the Phoenix Neurological Associates are going to run them, so we'll have to wait and see. thanks! robyn ________________________________ From: " ssaturnino@... " <ssaturnino@...> Sent: Monday, October 19, 2009 3:39:56 PM Subject: Re: IVIG Has he been tested for Lyme Disease? The expensive Western blot test at IGenix in Palo Alto? Sent via BlackBerry by AT & T IVIG ________________________________ Has anyone on this list had any experience with IVIG? My father was diagnosed with ALS at the beginning of October. He was originally diagnosed at UCLA and then again at an ALS Center of Excellence in Phoenix. Although the doctors in Phoenix were pretty sure the diagnosis was ALS, there were waiting on CSF tests to officially confirm it. Today, we heard that the CSF tests indicated an autoimmune disorder of some kind and further tests were needed. They also recommended IVIG. I'm waiting to hear exactly what tests were abnormal. I would appreciate any input into the IVIG experience. Thank you. Robyn Quote Link to comment Share on other sites More sharing options...
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