Great post…

September 28, 2010 at 1:12 am

What an excellent post, I agree with everything you said. When I was first sick there were many on the forum (almost 8 years ago,) who kept implying that those who were not making a full covery were doing something wrong. The old “blame the victim” syndrome… I was such a severe case of CIDP that Mayo told me after 4 months there that there “was nothing more they could do for me.” In their words I was terminal. But people kept telling me to get monthly IVIG & I would be just fine. I was having IVIG twice a week, 1,000 mg of solumedrol & for 12 weeks I was getting all three treatments every Friday. First the plasmaphersis, then the IVIG, then the solumedrol. I felt more dead than alive, but still I was total care. Cytoxan would finally arrest my CIDP & allow some of my nerves to heal…

The severity of these illnesses depends on so many variables…age at onset, if axonal damage was suffered, how hard a person is hit by GBS or CIDP, treatment options available, etc. People ask questions like, when will I walk again? When will I get the use of my hands back? The answer to all of our residuals is “When the nerves heal!” It is no miracle when someone tells their success story & says that they have made a full recovery, it merely means that they had what is called the classic case of GBS & all of their nerves have healed. But I do believe that even many of these people suffer some weakening as they age. Because once these nerves have been damaged, they are never really the same again, not like the ones we are born with. I have my own theory that this is where the fatigue comes in; push weakened nerves to function all day, for years & years & it exhausts them.

It is wonderful to have a positive attitude on this forum, but for anyone to suggest that they will accept nothing less than a full recovery is being unrealistic. It has all been predetermined from the onset. Yes, many do make a full recovery, but they usually are not the ones we tend to see on the forum. If all of the posts here have to be positive, we would have very few members. People come here for help, & they should be able to complain about GBS or CIDP all they want. That is what forums like these are for, if one wants social networking, go to Facebook or My Space.

great post!

June 4, 2010 at 4:03 pm

Very interesteing, wondering what else I am missing. jeezzz, just when I thought we had a handle on the do’s and don’ts, I am trying my best and thats all I can do. thanks for bringing this up.

Great post

October 3, 2009 at 10:46 am

This has been a very interesting post and I will be following Alice to see what happens with you. I haven’t posted in a long while and have tried a couple of different treatments with no long term success. Good luck Alice and do keep us posted! Gabrielle

Great Post

August 14, 2008 at 9:20 am

Thanks for sharing. I also am a newby to the forum. I was diag. with GBS in April 2007. I receive IVIg every 3 weeks at this time. I still have weakness, numbness & tingling to fingers and toes. IJ walk with a rollator. Initially my LP showed a normal high protein level. But after they ruled everything else out. Diag. GBS, I also have absent reflexes. There seems to be so much to look for. Hang in there and get better. If I can help with anything let me know.