Here' my situation: My husband's new neurologist (I went to him because I came across his website stating he specialized in neuropathy) prescribed IVIG. EMG/NCS findings were consistent with severe demyelinating sensory motor neuropathy as seen in CIDP. Necessary blood work was done and neuro prescribed the IVIG. He said the serious risks of stroke, renal failure, and aseptic meningitis were so low, and not to be concerned. IVIG has been just been approved to be done at home. My husband (77 years young, controlled high blood pressure, has Alzheimer's [middle stage],.) And I am now aware that a clinical trial, phase III is underway using IVIG for Alzheimer's)to be completed early 2011. So the IVIG may help the CIDP and or the Alzheimer's. So now there is a ray of sunshine in a realm of darkeness. Because of the deadly possible side affects we go back to our new regular neuro (this our third visit to her) for her advice on the side affects of IVIG. I could feel she was angry that we had the neuopathy testing done elsewhere and she said she wanted further tests - lumbar puncture and nerve biopsy - that could give her a better indication, before she would discuss CIDP and IVIG. I told her that unless the tests would give a conclusive answer I felt they were too invasive. So that visit was a waste of our time. And she just lost a patient. Not because we disagreed but because she was curt, rushed, and unwilling to explain and DISCUSS my concerns. So tomorrow we are going to a third neuro, and I directed the receptionist to inform the neuro that we are coming for his opinion on the safety of IVIG as it pertains to my husband and his medical condition. So I hope that goes well.
So thats my story. I am wondering if the IVIG would be better done in an outpatient hospital setting for the first few times? It was prescribed at home due to the neuro having priviledges at a hospital which is 1 hour 20 minutes away. Neuro says he felt home with the nurse was same as outpatient hospital. And I was wondering if anyone had or knows of anyone that had stroke, renal failure, or aseptic meningitis, from IVIG?
I want my husband to be pain free from his neuropathy, but I don't want to kill him. One minute I am so happy that I could cry with joy, that he could be helped and I am all ready to move forward with the IVIG, and the next minute I am crying with fear and despair because I am scared of doing something that might harm or kill him. I know I have to make a decision soon but I'm really, really scared. thanks for reading and any advice.