It has been 2 years since I was diagnosed with CIDP. I have axonal damage to my nerves. Basically I am wheelchair bound because my balance is so off. If I walk its with a walker and not very far. Maybe a few steps. My pain is controlled with neurontin, lyrica and cymbalta. I also take cellcept and morphine. I was wondering if anyone has had any luck in recovery with axonal damage? Have you healed enough to gain any sort of normalcy back? I was an active nurse before I was hit with this terrible disease and now am having trouble finding my place again. The doctors say "idk" when it comes to prognosis and when I will heal. But maybe someone has healed from axonal damage and can share please.
Hi. From the onset, five years ago, I had and still have severe generalized demyelination and axonal damage. No one would give me a prognosis either. My neuro said that I would have to do the work, because medicine alone wouldn't be enough. I fought every single day to keep going. I had head to toe weakness. Some days the most I could do is wiggle my feet and walk a few steps. It was a roller coaster. I was considering stem cell only a year ago. Now, I am down to a 3/4 dose monthly ivig from a weekly ivig and high dose methylprednisolone. I am well enough to work once I figure out what I want to do. I can even run again and have all my fine motor skills back. It took more than I thought I had to get here. I would be happy to share everything I have learned. I still have pain and get tired more quickly than my ambition but I am living again instead of simply surviving each day. I recently found out that axonal damage effects the mitochondria. I know this was part of my problem. Now that I am addressing it I feel much more stable and confident that I will be well again tomorrow. Mitochondria is a relatively new area of study and they are learning about it every day. There are proven ways we can prevent further damage and heal some of it as well. Here are a few links that have helped immensely.
Thank you for the response. I, too have looked into the stem cell transplant. I am nervous about taking such a big step. Did you get the stem cell or what exactly did you do to feel better?
I did apply and was accepted but my insurance denied. Had they paid for it I would have done stemcell. While I was trying to figure out what to do I went through all my hospital records and started addressing every issue that I could that would help my immune system. I researched everything. When I understood what the problem really was I found a way to deal with it. Like with central fatigue, I know I can do anything but have to modify how long I can do it and avoid multi-tasking while I am doing it. With each thing I fixed I got better which in turn I was able to exercise, and that gave me more energy to be with friends again which in turn..... and so on. It was one baby step at a time. I also got off all medications other than ivig. I think I had side effects from the meds that I wasn't aware of because I was so miserable. I meditated. I made lists of thing I didn't like and eliminated them. I made lists of things I always dreamed of doing and I did them. I avoided anyone who interfered with me getting well. It was mind and spirit as much as my body that I had to work on. I felt like I walked on water the whole first year getting through the worst of it. Even though I couldn't do something I never stopped trying to do it until I eventually could. The second year still not good with relapses and very angry. The third year the prednisone was unbearable and still having relapses I wanted to be done. I went off the prednisone which I thought I couldn't live without but I did. I have gone gluten free....ish (not completely) to see if it would help (allergy;leaky gut?) and it did. I went on a low oxalate diet to help eliminate "dead cells" and help with inflammation. I am taking Now brand calcium powder before I eat, and magnesium after I eat. I take b12 and eat bananas for potassium. I haven't had this much energy since before I got sick. Here's a link to Trying Low Oxalates. There is also a group on Yahoo. Fresh air everyday is important. I force myself to go out everyday. And I force myself to have fun in some way every single day. I have to say I have a really good doctor. We are a team. I think it starts there.
You can always apply for stemcell and not do it. I am glad I did. I don't know what tomorrow brings and it feels good to have an option open to me, whether I use it or not.
Thank you for the response. I, too have looked into the stem cell transplant. I am nervous about taking such a big step. Did you get the stem cell or what exactly did you do to feel better?
So I was DX' with CIDP in 2010, and since then it has been a roller coaster. I was medically retired in 2012, this year I have fallen 41 times as of today, and I do use a power wheel chair when I leave the house. Thankfully the VA finally got my lift installed in my vehicle today.:)
I went to KU Medical (without a referral), Because there is just so much that is wrong with my body and I could not get doctors here to take me seriously. My original Neuro retired. So the KU Neuro has confirmed demylinating neuropathy with chronic axonal damage in both legs. On the plus side the arms have gotten better. Still no consensus on what is causing the double vision or off and on blurry vision.
But I am here to tell you the KU center of excellence really is pretty cool. I will gladly make another 5 hr drive to see these people, and stay several days for testing.
1) The prospects for regeneration of axons are better for axons in the peripheral nervous system than for axons in the central nervous system. CIDP, unlike multiple sclerosis, is primarily a disease of the peripheral nervous system. See the article entitled "Axon Regeneration in the Peripheral and Central Nervous System"-
2) All of us (even healthy people) have some damage to both myelin and axons. The amounts of these types of damage is important. Partial recovery can be achieved by restoring myelin even if axonal damage remains. There may be other possibilities for restoring myelin which might work better than the ones that KAbels has tried (e.g., rituximab, stem cell transplant).