Reply To: Second Nerve Conduction Study, What to do?

July 16, 2012 at 4:13 am

It’s ok to look up information on the internet so that you can ask informed questions of your neurologist, but you should try to avoid self-diagnosis, especially convincing yourself of the worst when you do not have the expertise or the information to make such a judgment. I know that’s difficult.

Also keep in mind that there is much variation with CIDP, and there are several treatments. Treatments which are effective for some may not be effective for others. It is not unusual for the treatment plan to be adjusted as the neurologist tries to determine what is most effective for a particular case. It seems that your case is slowly progressive. If other treatments fail to halt the progression, it may be that you will be eligible for the stem cell treatment being studied at Northwestern. Several people here have reported excellent results from this. The trials should be completed in just a few years, after which it may become more generally available. In the meantime, try to find the bright side in every situation. Do what you can to keep your spirits up as you fight this disease.

I have some axonal damage from the knees down which may be permanent. Whether it is or not, I don’t let it bother me. I just do the best I can with the legs I have, which is good enough for most purposes.