Hi, All,
Just wanted to share with everyone, and I hope a few followers of my threads that have CMT. I have decided to take another round of treatments. I had my first one in September and have my second one scheduled for next week. Details of the first treatment will be at the end of this thread.
I decided to go ahead with another round of treatments, based on the fact that even though I didn't get the repair I was hoping for (muscle building nerve conductivity) I did get tremendouse results in other areas (detailed in my earlier threads). I am conviced that a lot of my non-related problems are actualy a part of this disease and since none of these problems have re-appeared that maybe this round will advance to the actual nerves. I would encourage anyone with CMT to take a hard look at Stem Cell therapy, it has made my life a lot more tolerable. My thinking is that I have back stepped 3-5 years in the progress of my disease (no longer have to wear those AOL braces one of the biggest thngs).
Even though you don't know what the cells are doing for several months after your treatment, I have found that there are indicatores, usually inflamation/moderate pain. On this first round, the day after my treatment I had pain in my kneck, shoulders and head that wasn't a normal pain. I can't know what exactly they went to work on for several months so will have to wait and see exactly what they are doing. What I do know about the shoulder and neck area is that I had a svere car wreck about ten years ago and lost a lot of mobility in thaes areas. About the third day I started getting a strange feeling in my blind eye so got my wife to measure where my original improvemnt had stopped progressing (aprox. 7/8 of an inch from the rimm of my glasses). Not an exact science of measuring, but something that will help me determine the improvement. She re-measured 4 weeks after my teatment and found it had improved my range of vison by 1/8 of an inch. Doesn't sound like much, but believe me I can tell it.
I will end on one point that I think is critical to being a Pioneer. When you have a treatment keep a daily diary on wht is going on with your entire body. Not just to the disease you are fighting. My diary helped me get through the periods that I felt everything was hopeless and it will help you pin point improvemnts that overtime you may not realize happened.
Good luck to all that are in the Pioneering process, but rember it is our only hope to develope life improving opportunities for so many diseases that are non-treatable. I'll keep you updated on my progress.
Just wanted to share with everyone, and I hope a few followers of my threads that have CMT. I have decided to take another round of treatments. I had my first one in September and have my second one scheduled for next week. Details of the first treatment will be at the end of this thread.
I decided to go ahead with another round of treatments, based on the fact that even though I didn't get the repair I was hoping for (muscle building nerve conductivity) I did get tremendouse results in other areas (detailed in my earlier threads). I am conviced that a lot of my non-related problems are actualy a part of this disease and since none of these problems have re-appeared that maybe this round will advance to the actual nerves. I would encourage anyone with CMT to take a hard look at Stem Cell therapy, it has made my life a lot more tolerable. My thinking is that I have back stepped 3-5 years in the progress of my disease (no longer have to wear those AOL braces one of the biggest thngs).
Even though you don't know what the cells are doing for several months after your treatment, I have found that there are indicatores, usually inflamation/moderate pain. On this first round, the day after my treatment I had pain in my kneck, shoulders and head that wasn't a normal pain. I can't know what exactly they went to work on for several months so will have to wait and see exactly what they are doing. What I do know about the shoulder and neck area is that I had a svere car wreck about ten years ago and lost a lot of mobility in thaes areas. About the third day I started getting a strange feeling in my blind eye so got my wife to measure where my original improvemnt had stopped progressing (aprox. 7/8 of an inch from the rimm of my glasses). Not an exact science of measuring, but something that will help me determine the improvement. She re-measured 4 weeks after my teatment and found it had improved my range of vison by 1/8 of an inch. Doesn't sound like much, but believe me I can tell it.
I will end on one point that I think is critical to being a Pioneer. When you have a treatment keep a daily diary on wht is going on with your entire body. Not just to the disease you are fighting. My diary helped me get through the periods that I felt everything was hopeless and it will help you pin point improvemnts that overtime you may not realize happened.
Good luck to all that are in the Pioneering process, but rember it is our only hope to develope life improving opportunities for so many diseases that are non-treatable. I'll keep you updated on my progress.