Does anyone know if IVIG helps prevent further nerve damage (help slow down the progression) or does it just relieve the symptoms?
It slows down the progression. IVIG allows the myelin to regenerate. A nerve is like an insulated wire and carries electrical impulses from your brain. The myelin is the insulation and the axon is like the wire. (see: http://www.nlm.nih.gov/medlineplus/ency/imagepages/9682.htm ) Without the myelin, the electrical impulse shorts out and never gets to where it needs to go. The myelin also protects the axon.
Among other things, nerves carry messages to muscles to instruct them what to do. If the electrical impulse that is intended to instruct a muscle to take action never gets there, the muscle won't do anything. Myelin is resilient. If given the opportunity, it will heal itself like a wound. The axon, on the other hand, is not very resilient and can become more or less permanently damaged if left unprotected.
My image of IVIG is that it distracts the autoimmune action in your body (that is essentially attacking your myelin) long enough for the myelin to regenerate. When the IVIG wears off your body goes back to work in trying to destroy it.
Moral of the story, if IVIG works for you, keep getting it on a regular basis and don't wait until you are really weak. When you are weak, an axon, somewhere in your body is vulnerable to permanent damage. Finally, I am not a doctor, so my description may not be medically perfect, but it's close.
That question has puzzled me too. If anyone has any information I am sure others would want to know.
A tip I would like to share: If you dread the "stick" on infusion days, be aware there is a topical gel containing anesthetics that will virtually eliminate any pain associated with needle insertion. I have been well pleased with a gel called "LET gel" containing lidocaine 4%, epinephrine 0.05% and tetracaine 0.5%. I get this at my local compounding pharmacy. A couple of drops applied one hour and then 10 minutes prior to needle insertion really helps.
mike
Evan , you see extremely versed in IVIG. I have a question for you. My first round of IVIG did not provide improvement in my symptoms, i.e. weakness, pain etc. Do you know if it takes more than one round to provide improvement. My neuro is will to order treatment once a month if I want it. Just don't know if it is worth it. Thanks for any response/information you might provide.
Evan B. said:
It slows down the progression. IVIG allows the myelin to regenerate. A nerve is like an insulated wire and carries electrical impulses from your brain. The myelin is the insulation and the axon is like the wire. (see: http://www.nlm.nih.gov/medlineplus/ency/imagepages/9682.htm ) Without the myelin, the electrical impulse shorts out and never gets to where it needs to go. The myelin also protects the axon.
Among other things, nerves carry messages to muscles to instruct them what to do. If the electrical impulse that is intended to instruct a muscle to take action never gets there, the muscle won't do anything. Myelin is resilient. If given the opportunity, it will heal itself like a wound. The axon, on the other hand, is not very resilient and can become more or less permanently damaged if left unprotected.
My image of IVIG is that it distracts the autoimmune action in your body (that is essentially attacking your myelin) long enough for the myelin to regenerate. When the IVIG wears off your body goes back to work in trying to destroy it.
Moral of the story, if IVIG works for you, keep getting it on a regular basis and don't wait until you are really weak. When you are weak, an axon, somewhere in your body is vulnerable to permanent damage. Finally, I am not a doctor, so my description may not be medically perfect, but it's close.
Jana
Yes, I believe it can take more than one treatment. Hopefully, your insurance covers the cost! I had an acute “bout” at one point (I’ve only had this once in the 15 years since my diagnosis) and it took probably 3 treatments to get me back to my “normal.”. The dose that I am familiar with is 1 gram IVIG per kilogram of body weight. So roughly speaking a 132 pound person would get 60 grams of IVIG. Are you getting the right dose? Some docs will also prescribe a high intravenous dose of prednizone. Best wishes. Hope this is helpful.
Evan
I receive my first ivig treatment this week. Have been diagnosed with CIDP. My second EMG showed damage to Axon nerve as well. I hope it helps because I am getting so weak it is hard to do daily activities.
Evan B. said:
It slows down the progression. IVIG allows the myelin to regenerate. A nerve is like an insulated wire and carries electrical impulses from your brain. The myelin is the insulation and the axon is like the wire. (see: http://www.nlm.nih.gov/medlineplus/ency/imagepages/9682.htm ) Without the myelin, the electrical impulse shorts out and never gets to where it needs to go. The myelin also protects the axon.
Among other things, nerves carry messages to muscles to instruct them what to do. If the electrical impulse that is intended to instruct a muscle to take action never gets there, the muscle won't do anything. Myelin is resilient. If given the opportunity, it will heal itself like a wound. The axon, on the other hand, is not very resilient and can become more or less permanently damaged if left unprotected.
My image of IVIG is that it distracts the autoimmune action in your body (that is essentially attacking your myelin) long enough for the myelin to regenerate. When the IVIG wears off your body goes back to work in trying to destroy it.
Moral of the story, if IVIG works for you, keep getting it on a regular basis and don't wait until you are really weak. When you are weak, an axon, somewhere in your body is vulnerable to permanent damage. Finally, I am not a doctor, so my description may not be medically perfect, but it's close.
I think Evan B has it on the technical stuff.
Specialist gave a simple explanation. Some nerves are gone and nothing will fix them. Some nerves are on the way out and IVIg should (hopefully) reverse that and (even more hopefully) repair them. The remaining good nerves the IVIg protects. Almost no-one says it is fast so expect results with time.
I believe my first treatment series stopped it getting worse around the two/three weeks mark - at least that was my perception. The jury is still out on repair - but at least I am very happy the slide appears to have stopped.