When people write about "relapse" - what does that mean?

Do you wake up one day and you're back to not being able to walk at all - or symptoms just as bad as when you began? Does anyone know the cause - meaning does the body actually destroy the nerves again all over for some reason? Or does relapse mean you are set back a bit in your recovery? thanks!

I had almost completely recovered at 8 months out and got a sinus infection 4 months ago. The nerves that were affected the first time seemed to be affected again but nowhere near the degree of my first time along with a nerve hyperexcitability problem causing my heart to race as well as more increased motor twitching and some fleeting nerve pain. It came on slowly the second time for me. First more twitching in my calves, then more numbness in my legs, then twitching in my chest, then heart racing, then abdominal twitching, then abdominal nerve pain, then eye symptoms again. All over a course of several months. I've been able to work through it much better this time and remain stronger because of the lesser degree of the symptoms. I wish I knew if my body was destroying the nerves again. I've never been treated with anything other than Gabapentin and that was to calm the nerves causing the racing heart. It feels like it doesn't really treat the underlying problem just kind of a symptom treatment. I always have set backs in recovery when I do too much but after this sinus infection it felt like my body was attacking itself again but not to the original degree but no one has explained this to me. I am seeing a specialist at Johns Hopkins soon and hope to learn more. I'll be a year out next week.

I have a hypothesis that our bodies produce more "harmful" antibodies every so often that cause the setbacks or relapses. Not to the degree of the initial attack but enough to stir things up. Keep in mind no one has ever told me this and it's just the product of my own musings. But I know for many illnesses your body continues to produce antibodies for a very long time so it made sense to me. I could be quite wrong of course!


INteresting hypothesis. It is curious though, you're right. There must be some renewed nerve damage for one to have a relapse. I'm going to ask my neurologist about it next week. Thanks for your info!
Nostromo said:

I have a hypothesis that our bodies produce more "harmful" antibodies every so often that cause the setbacks or relapses. Not to the degree of the initial attack but enough to stir things up. Keep in mind no one has ever told me this and it's just the product of my own musings. But I know for many illnesses your body continues to produce antibodies for a very long time so it made sense to me. I could be quite wrong of course!

I would love to know what your neurologist says.

Hi mdolich,

When you had your first relapse in November 2005, you had to wait quite awhile for your appointment in January. Did you have the same symptoms or new ones as well the first time you relapsed? In 2008, you said that it also affected the right side of your upper extremities. Did you get treatment sooner once you were diagnosed with CIDP? What was the longest time you had to go without treatment and did you recover pretty well? Thanks!