question about backsliding/return of symptoms

Those are big questions and the “simple” answer is yes! The nervous system is the communication system for the entire body. There is no way to know how each individual nerve has been affected except by autopsy 😮 You can’t compare facial nerves and muscle nerves ~ that’s like apples and oranges. Your facial nerves may be working at their maximum for the damage done.

Most of us suffer from the cold, hot or both weather extremes. This is not the “usual” cold which “normal” people present. At the top of the page you will find a category “search”. Click that on and type in residuals. You will get a wealth of information on residuals which our “family” experience.

Fatigue is the most common factor with all of us here. We have all found or are finding our new “normal” because nothing is the same now 😮 And we have found that the only way to “survive” is with rest, rest, rest and patience, patience, patience!!!

I wish you well and a delightful Christmas season 🙂

Hope–There is still hope for a full recovery, if you slow down. I understand what you mean about the sensory nerves, just remember, those are nerves like all the other nerves in your body, they wear out also. I still have over 90% of my sensory nerves out, not too bad at least I can’t feel the cold on my skin like others do;) i just feel it as pain, inside, after the fact. Patience is the hardest thing to live with now, for me anyways, its a real slow thing to get used to. If I were you I would rest tons more, limits have to be set low to start and followed closely until they can be raised ever so slowly, then relax and enjoy your new norm. Rushing recovery only makes it mad and it gets revenge anyway it wants with any nerves it wants. Relapses aren’t fun, slow down now before your body makes you.
I hope you are able to enjoy this Holiday Season. Take Care.

1. Can you have resolution of the something and this come back in times of fatigue? I guess I do not understand if residuals are continuous or can be intermittent nor why the short nerves to the face have not healed better in 9 months of having this.

YES. RESIDUALS CAN BE BOTH CONTINUOUS & INTERMITTENT. GBS NERVE HEALING IS NOT PERFECT & DOES THE BEST JOB IT CAN. IT IS THIS IMPERFECT HEALING THAT CAUSES THE FATIGUE. WE DON’T REALIZE IT, BUT WE WORK SO MUCH HARDER THAN NON-GBSERS AT A TASK.

2. Why are sensory nerves affected by fatigue anyway? Why would facial numbness be worse with fatigue? It is not like they (sensory nerves) are being overused in the same way that (motor) nerves to muscles might be with overuse of muscles with too much walking.

I THINK ANSWERS ABOVE ANSWER THIS TOO. AT LEAST, I HOPE SO.

3. My toes keep going numb with mild cold in the way that they used to do with really hard cold (such as being outside in snow). Do other people see this? Does it mean anything different than just that my body does not work very well now and can anything be done other than staying out of cold, double socks, and keeping a blanket at my desk at work?

YES. NO & NO.

you are doing too much & as judi says, you must do less & rest more.

gene, away from home

Hi With HOpe,

You are at a time that we experienced last year. Initially we thought it was a backslide as you mentioned. We followed with rest. The symptoms persisted, weakness, fatigue, sleeplessness, heavy feet and legs, loss of grip, even with the rest. This went on for about 4 weeks. At this time we were re dx w/ cidp. Ivig was sched. for the following week. Days before, I wanted to cancel, Kevin seemed to have a miraculous recovery and I figured the rest kicked in and it was just residuals. What I am saying, there were clearly up days after the down days. The Dr. still had us go, we had a repeat ncv/emg replicated from the first and in fact there was a progression and we resumed ivig. Plus or minus a few hurdles, here we are today, regular ivig. (Now I have to formulate a letter requesting maint. doses of ivig instead of cell cept, that is a whole other story)

At the very least, would it be possible to have a repeat ncv/emg or a l/p to see if there is protein, therefore indicating the active demylienation? It would be better to be as sure as you can as opposed to additional progression taking place. The new footdrop worries me. If it is cidp, it is as simple as ivig to help you!

You have to take time to worry about yourself and your condition, the people at your work need you healthy, because you do give hope, as you have given to me many times in our short correspondence.

Once we knew for sure and the guessing game was over, it was such a relief and we were able to turn the page to a different chapter in our book of life. Now we continue the chapters with new adventures, hurdles, ups and downs, knowing that we have ivig to fall back on to stop progressiions.

Good luck and best wishes in your quest for answers to your questions. I wish you and your family a blessed Christmas.
Dawn Kevies mom

With Hope….there is always so much hope. I agree with everything everyone else has said here. If I have learned anything over the last 24 years of recovery(yes, I believe I will always be in recovery!) it is that rest is the best healing tool any of us can recommend and then give to ourselves. As to the facial nerves…when we are tired and stressed, the muscles in out face contract. We use more muscles to frown than to smile! So…I believe those muscles also tire from our expressions and we will have some discomfort. I get “charlie horses” in my face, especilly when I am stressed or tired. Keep the faith. I was on life support during my bout with GBS. It is a major nuerological assault to our bodies. It took me almost 3 years to be able to work and live a “normal” for me type of life.

Take care and Merry Christmas.

Janet