April 10, 2016 at 10:08 pm
Hi everybody! Been a long time since I showed my face around here. Had a medium severe case in fall 2000. Mostly paralyzed but never went on a vent. Escaped hospital after 42 days and resumed full-time work as a cabinetmaker in six months and one week. Fatigue issues disappeared after about two years. Minor residuals (numb spots, minor nerve pain, localized muscular weakness) mostly disappeared after about seven years. Never did regain all muscle tone but then I never really worked at it. In January I began to notice a recurrence of the longest-lasting residuals: numbness on the soles of my feet, on my right thigh-front, my upper right arm-outside, and the outside edges of both palms and left little finger.
These are obviously not debilitating and are basically what I figured I would have to live with for the remainder of my life. Thought it was enormous good fortune when they disappeared so I’m not terribly bummed to find them returning. However, I was not expecting them to return and have not been able to find any info on the net regarding such recurrence. And the biggy, of course, is wondering if I need to take this up with the drs. Any info would be greatly appreciated.
I know that these seem to be petty concerns, and I offer my sympathy to all of us who have not been as fortunate in their recovery as I. But as we all know, information on GBS can be hard to find.
April 11, 2016 at 8:01 pm
Tom, you may wish to look into Alpha Lipoic Acid. It’s over the counter and has no side affects for most people. There was a clinical trial here:
It was studied and reported on in this article:
I’ve been taking 1200MG per day and it seems to help me. Others have reported a return of minor symptoms when they discontinued it. The symptoms went away when they restarted taking it.
Not all ALA is alike; I researched it and found the one here that I take:
My CIDP is still in remission since onset in 2008. However, it left me wheelchair bound. I hope you continue to do well and stay in remission!
April 11, 2016 at 8:35 pm
Hi Jim, Thanks for the info. I’ve got annual physical coming up this summer. I’ll check with my family physician and see what he knows.
Sorry to hear of your wheel chair confinement. The short time I spent in one was quite enough for me. I have a BIL who’s a double amputee. If you’re as adventurous and determined as he, I’m sure you’re making a good life of it.
April 12, 2016 at 2:35 am
The most important thing to monitor if you think you might be relapsing is your strength. Do something which is reproducible, such as standing on the balls of your feet to test foot strength. If you have noticeable loss of strength, you need to get back to your neurologist right away.
April 14, 2016 at 10:41 pm
Hi GH, Definitely not a relapse, just some of the old residual stuff. If I can’t walk when I wake up in the morning, then I’ll panic. 🙂
April 15, 2016 at 6:19 pm
The NIH clearly says, “About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack.”
Regarding the tingling you stated, “In January I began to notice a recurrence of the longest-lasting residuals:”
If something has ‘mostly disappeared’ and then there is a ‘noticeable recurrence’, by definition you have a relapse.
Return of the manifestations of a disease after an interval of improvement.
As you state, “If i can’t walk when I wake up….” You will have waited too long to seek helpful treatment.
Increased tingling could be in conjunction with muscle loss which is not yet apparent.
April 15, 2016 at 10:32 pm
I stand corrected. That’s a bit of info I had not encountered before. Thank you.
June 28, 2016 at 12:38 pm
well I was onset 2006, never gain full power in my feet but was exercise and was getting up on my toes but, in november last then I got lot of more numbness in the feet, thought I had over worked my self but one morning I found my toes did not work, I think it was minor relapse I did not tell my family so they did not worry, it did not get worse then this but it don´t seems to come back, so I walk little different 🙂
I say if like you if I cant get up in the morning then it is something to worried about.
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