Reply To: nerve healing process

February 2, 2013 at 12:51 am

Hello Larry,

Unlike your brother, my disease course was a moderately quick decline to a point, and then a very rapid decline after that.  Treatment, though, would arrest the rapid decline and promptly return me to nearly full function in a week or so.  I am considerably better than I was five years ago.  That I am significantly better now, though, does not mean that my treatments necessarily caused a reversal of the disease, just that they kept the effects from being more severe and long lasting.  My neurologist and I believe that I suffered very little damage to the axons and nerve bodies and that my myelin, while not perfect, is in decent condition.  Based on your descriptions, I think your brother may have also suffered from axonal damage.  His recover will necessarily be slower, just because axons regenerate more slowly than myelin.   I am afraid, therefore, that my experience and your brother’s are so different that what worked for me may not work for him.  Still, nothing ventured, nothing gained.

I found PE to be very helpful, even essential, in maintaining function and almost benign in administration.  I had a central venous access catheter, so the process of the PE itself was painless.  It was time consuming when I was getting it several times a week, but because I had such good response, it was well worth it.  Maintaining the catheter was essential, and I did so with vigilance.

Godspeed in finding an effective treatment