Has anyone had IVIG Infusions for Neuropathy?

I am getting them for CIDP and it seems to help for a couple of weeks. My infusions are every 4 week.

Idiopathic- is used to describe a diagnosis without knowing the cause.

An you get a second opinion?

I have a new doctor lined up, but wow, 3 months to get in and then all the medical records transfers from hospitals, placed I’ve lived etc. But I don’t want to give up on any possible remedy yet, so I’m going through with it because my current doctor won’t talk, give suggestions, coach, or present any ideas. I had to beg for a nerve biopsy (no cause found, just confirmed by severe axonal loss I’ve had for 5 years now). My current neurologist won’t even order an MRI, says it wouldn’t find anything. (Hello, have had bad lower back pain for 5 years, and I had a kidney infection when I landed in the hospital with this sudden onset of crippling PN?) Because of metal in a.n ICD I had for 18 years ago, I could never have an MRI, until I got it all changed out to an MRI friendly one when it needed replacing 10 months ago. But my neurologist won’t do an MRI. So yes, I need a second opinion to see if an MRI, IVIG, Or plasmapheresis could help the diagnosis or offer any remedies! I am so glad to hear what is helping others here and learning from them, as I’m finding out I’m not alone.

Thank you for the hydration advice. I forgot my "watering can" on my last Ivig and they only had the 4oz bottles. I was there for almost 8 hours so I had quite the pile of empties. I do hydrate so much more before. I found out thos past infusion that it should take 4 1/2 hours not less than 2 hours. Hmm no reason now to wonder why I had horrendously wicked headaches for weeks after.

What antibiotic were you given for the kidney infection? Antibiotics such as ciprofloxacin can be neurotoxic.

I am not sure of the antibiotic; it was given to me by IV for 3-5 days while I was in hospital over 5 years ago. The neuropathy was already underway, as I could barely walk when I got to hospital, and it was there that they discovered the UTI/kidney infection. I lost my leg use (and hands) after a couple days in hospital, but the weakness started and progressed about 2 weeks earlier. I left hospital after 2 weeks for a 7 week rehab place where they worked with me in my new life in a wheelchair; with later home care, I eventually was able to walk with walker after 6 months. They tested me for Guilian-Barre about a month after I stopped walking, but it was supposedly negative. Today when I take antibiotics

Went to get blood drawn today, nothing after a wee bit of searching. I was told to hydrate more. See above, average 72 to 96 oz a day.. Thought you all would appreciate the humor. It is either laugh or cry.

I had my IVig treatment last week for reasons other than neuropathy, but my neuropathy and my bloodshot eyes are so much better this week. I will tell you how long it works in reigning in these conditions.

Is it possible to travel for months to an area if you are getting IVIG? I am retired and get IVIG in CO but we also like to stay in another state during the winter. How is this done?