Axonal CIDP

Does anyone have axonal, demylenating cidp? My daughters Neuro says it’s not cidp because it’s axonal (I’ve heard there is such thing as axonal cidp but he says it’s very rare). I need help. Please help me.

Myelin is the outer, insulating coating on the nerves. The axon is the inner "conductor". The D in CIDP (demyelinating) is there because this disease attacks the myelin.

My neurologist tells me that if the myelin is destroyed, then the axon is exposed and open to attack. So, yes, if you have CIDP, it can also result in damage to the axon.

My neurologist also says that myelin regenerates pretty quickly. But, the axon either regenerates very slowly and incompletely, or maybe not at all. Therefore, if you have CIDP, it is essential to get treatment quickly before there is damage to the axon.

What kind of treatment would you get? My husband needs something to help for the pain. IVIG infusion, gabepinten, lyrically, nothing will help, what next ???

Uncle Bill is exactly right. I have axonal damage with my cidp. It is a rare form of cidp. My neurologist and many neurologists that have examined me have concluded this as well. Its about 20 % of cases that have it. But this disease (CIDP) is rare already. So you have a rare of a rare. Axonal damage takes alot longer to heal from. I am currently receiving IVIG weekly. I am on neurontin, lyrica and cymbalta for the neuropathy pain/burning. I am also on cellcept. I was hospitalized for two months going through different pills til they determined that I needed the combination of medications to help with the pain. I also did plasmapheresis in the hospital. That helped alot!

There are a number of variants of peripheral neuropathy. The most likely variant here is called Acute Motor and Sensory Axonal Neuropathy (AMSAN) – sometimes called ASMAN. Typically AMSAN has “profound axonal neuropathy” with “some demyelinating components”. AMSAN is usually considered to be a variant of Guillain-Barré syndrome which, if it continues in the long term is then called CIDP.
So it depends on which school your neuro went to and how much up to date with reading in the research as to what tag you get.
Most important is that you know the indications and there is treatment. My condition has been identified as “profound axonal neuropathy” with “some demyelinating components”. I get IVIg which is probably only good for the demyelinating part. My understanding is that once axons are gone - that is it, however keep active and hope the body "learns" new nerve pathways. Just remember - we are rare people....

I have been able to gradually wean down my dose of Gabapentin from high of 2600/day to 300/day. My body is healing and we all are different, but I am taking 500mg of ginger root, 3 x’s per day. I checked with my Drs and none of them objected to me trying it. It is worth a try as the GABA, really made me feel fuzzy brained. I have P.N. as part of POEMS. I was originally dx’d with CIDP! 3 years ago I couldn’t move my toes or rise up on the balls of my feet. Two years ago while I was hospitalized for a twisted intestine, we found out I had POEMS. I was in the hospital or in-patient rehab for almost 30 days. I had to use a 2 wheel walker when I left the hospital. I have now graduated to light AFO’s, I don’t need a cane, though I do use trekking poles when I am hiking in the hills and mountains around the beautiful Pacific North West! Keep exercising, find a P.T. Who specializes in Neuro Recovery and see him/her every 3-4 months. Keep moving. It is hard, but possible to recover. God Bless and Good Luck!

Thanks everyone that gives me some great info to look into and speak to her Neuro about. Capt001Mike Laura is also taking supplement, how does the ginger root help?

Mdolich, thanks for the link. I won't pretend that I understood all of it, but it indicates that the axons can regenerate.

When my neurologist got me on a regular treatment by IVIG, I improved quite a bit, but not back to where I was. I'm not really in bad shape (can walk without a cane, for example), but I am much weaker than I used to be, and get tired easily. It has seemed like I am stable: not getting worse, but also not getting better. I had given up hope of improving further, but I do go to a gym three days a week, and try to exercise some way in off days. Maybe I really am improving, but very slowly. It is hard to remember exactly how you felt, or how strong you were, several years ago. Well, I still believe in the value of exercise, and will continue to do it.

I believe an important aspect of this whole Neuropathy journey is to never give up!
We all go through some low times, but if we are determined, amazing things can happen! And one day they will find more effective treatment.
No one can predict how far we can progress, so set your goals high and your “personal best” may be mighty doggone good!
This journey we call life is full of twists and turns.
Find a way to enjoy part of each day…we are only allowed so many, and no one knows how many each of us is allotted !

Guys my daughter is only 14yo and has had cidp or what he says he thought was cidp for 2 years. Emotionally, she is in a bad way. Especially with the Neuro’s talk of stopping ivig due to her anxiety. It’s the only thing that works. We try and find something to bring her happiness each day.

I don't understand why he would stop IVIG if it is working. Is it because the infusion process itself causes her anxiety?

Ask your neurologist if he would consider trying to make the transition to an oral immune suppressant, like Imuran. It worked for me, and I have been off IVIG for over a year now - just take a pill twice a day. It takes months to kick in, but if it works for you, it is much simpler and easier than IVIG.

I feel for your daughter. This is hard enough for an adult, it must really be murder for a teenager. As other folks have said, attitude is very important. Keep trying to do as much as you can to keep her optimistic, and fighting this thing! I went from not being able to stand up, to walking with a walker, to walking with a cane, to walking unaided. So, it is possible to get to a pretty normal life.

I too transitioned from IVIG to an oral medication, Cyclosporine. And there are other meds Solu-Medrol, for one I believe, that can be given subcutaneously, so one does not need to be hooked to an IV for several hours every few week, or risk other unpleasant issues that be experienced when on an IV.