Axonal Damage

January 20, 2007 at 12:54 am

Don’t worry too much about Axonal damage being permanent. It usually isn’t.
Nate’s doctor told me right away that Nate had it and that it was not permanent.
It made all of us feel a lot better knowing that he had a long road but that he would get better eventually.
Nate got back the feeling in his shoulders and arms just about 2 mos after being diagnosed. His hands still have some numbness and tingling but they are usable and with less pain as time went by and Neurontin is working.
His breathing got better by about 3 mos but he still has a small amount of weakness in his lungs. Nothing bad though.
His legs started coming back by about 8 mos but still have tingling and numbness here and there.
If your dad is getting feeling back, that is a positive sign that his nerves are healing and it keeps going.
It all happens gradually but it seems like its very slow. Even a small amount of improvement is good and is a positive sign.
Keep yourselves and your dad upbeat but not too mushy. Just tell him remember what he was like just weeks ago and that he will keep making improvements. It helped Nate a lot, it still does one year later.
Nate is still pretty much in a wheelchair with a severe ankle deformity but with some PT help and a new AFO, he will be able to walk better.
Tell your dad about us. It will help him.

Axonal damage…

May 30, 2006 at 9:46 pm

I go by how my body feels or is doing, rather than what I am told by the doctors. Back in June of 2002 I was inpatient at Mayo, after I had been virtually paralyzed by CIDP since April 27th of 2002. I had already had my Dx changed from GBS to CIDP by the middle of May by their neuros.

I then had a sural nerve biopsy done & it was given to Dr. Peter Dyck, the “so-called” guru of CIDP to read. Remember, this is the neuro who actually gave CIDP its name & wrote the first book on it. I remember when he & his team came into my room & told me that I had GBS & would be totally cured within a year. Even though he was the so-called expert on CIDP, I knew in my heart that I would not be cured in a year. I knew I was in this for the long haul.

Now, over 4 years later, I still have nerve damage in my feet & some in my hands, numbness as well. Even though Dr. Parry tells me the strength in my hips & knees is normal, then why do I get so tired walking, & why are stairs still so hard? Maybe it’s as Marc says, I can do it well for once or twice, but then I start to feel fatigued. When Dr. Parry is testing my strength it is just the one time. I know I have axonal damage, if not I would be all healed by now. That is why I have just learned to accept that this may be as good as it gets, & go on the best I can. I think I know more at this point than the doctors about my body. I am finally learning to listen to it as well!