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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: Oct 3 7:57am | Replies (491)Comment receiving replies
I have been on IVIG infusions for about two months, every two weeks. Because of a little "sleepy" feeling in my fingertips ten years ago, I was diagnosed with Idiopathic Peripheral Neuropathy, without any further recommended action. About a year ago I began to have a little "sleepy" feeling in my feet, which started progressing about three months ago. I went to another neurologist this February and asked to have the cause diagnosed, if possible, to determine a treatment.
About the first of March I was diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuritis (CIDP) after imaging tests, nerve tests, spinal tap, etc., and started IVIG infusions. The nurse told me I should have started the IVIG treatment years ago. I am in no pain, but have occasional cramps, weaker legs with poorer balance, and the "sleepy" feeling in my feet and mostly lower legs. If the infusions do not stop, slow, or reverse this neuropathy, what are the progressive signs and symptoms? I want to know what to expect for any scenario. I understand IVIG therapy may be required for years. Will I develop constant serious pain, be on a "walker," or what??? š I am only eighty-seven years of age. My goal since about the age of twenty is to reach one hundred being mobile and able to think.
Replies to "I have been on IVIG infusions for about two months, every two weeks. Because of a..."
My neurologist said i have CIPD. Talked into having 5 days of IVIG treatments. No relief only
a rash over entire body following IVIG. Now on Dupixent No more IVIG for me.
I have been on IVIG monthly for 2 years. It was prescribed because of an autoimmune related sudden and severe peripheral neuropathy, affecting sensation,
balance, and mobility. As I understand it from my neurologists, IVIG stops further inflammation and damage to the peripheral nerves, and therefore allows physical therapy to build up balance and strength. That has happened slowly over these two years. I still use a walker and wheelchair to get around, and the pain of early peripheral neuropathy has stopped.
I have learned to accept this big bump in the road of my plans for my āgolden years.ā I still have many things working well for me, and hope that for you, too.
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I have more of an advanced form of neuropathy. The IVIG keeps it from progressing if you go off of it the neuropathy progresses really fast.
You get hammertoes- they blister
I almost lost my toe amputation is common with neuropathy
I canāt feel my hands and cutting them needing stitches
I have tremors (motor part of neuropathy) my husband has to cut up my food/I canāt drink out of a bottle or glass of water it pours all over you I have to use a cup with lid.
Loss of bladder control
CAN- cardiac autonomic neuropathy- they canāt control your blood pressure and you get tachycardia/ bradycardia
Nothing can be done ( given 8 yrs to live)
Canāt feel my legs loosing my balance and falling
Dizziness
Gastroparis+ slowing digestion so food sits on your stomach for days causing nausea and vomiting
It affects any organs that have nerves including brain
If you can stop it by taking IVIG therapy. I would do it in a heart beat.