IVIG Infusions

Posted by giarc60 @giarc60, Oct 11, 2018

Anyone had success with IVIG infusions for idiopathic neuropathy ?

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

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@govisri

In most cases of peripheral neuropathy the underlying cause has never been diagnosed, except in diabetes. Could it be due to some undiagnosed chronic infection or toxins? I think PN is only a symptom for some unknown underlying cause and docs simply call it idiopathic. I may be wrong and welcome comments.

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

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@dbeshears1

I would love to try it too, as I want to try ANYTHING that may help me! But sadly, my doctor refuses. While he can’t tell me what’s wrong with me, he is quick to tell me that IVIG won’t help me. I know we all have different tests done on us snd perhaps I’m not qualified for IVIG with my idiopathic neuropathy, but I look forward to following your journey.

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An you get a second opinion?

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@kimegraves

An you get a second opinion?

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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.

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@kimegraves

The night before my IGG infusion I hydrate with fluids and that seems to help with the headaches. Please check with your medical team before hydrating with large any of fluids. Good luck

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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.

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@dbeshears1

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.

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

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@pacer3702

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

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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

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@jfn

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.

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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.

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@jfn

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.

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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.

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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?

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