Info re a “post-GBS syndrome” like “post-polio syndrome”
March 30, 2022 at 5:30 pm
I’m looking for info re “post-GBS syndrome” — that is, a gradual (over months/years) weakening of muscles, particularly muscles used for walking/standing, that occurs many years after full/near-full recovery from GBS.
I’m 73. Had very severe GBS in 1999 (full paralysis, 4 months on vent), including axonal damage per EMG; recovered 95% (minor foot drop, minor balance issues); have done/still do daily aerobic exercise (elliptical, treadmill, walking). During the last three years, my walking speed very gradually slowed, my standing strength very gradually weakened, and my balance issues very gradually got worse. But, I can still do my daily aerobic exercise and all the “activities-of-daily-living”. During these same three years, I have experienced “stress symptoms” (skipped heart beats, cold hands, tremor) and mild depression. The docs (internist, cardiologist) have no explanation and stress/blood tests are normal.
I’m wondering if I’m experiencing a “post-GBS syndrome” — something like the well-recognized post-polio syndrome in which patients recovered from polio. but many years later developed muscle weakness/fatigue thought to be caused by motor neurons that were damaged by the polio virus, regenerated, and after many years began to wear out due to use/overuse of the regenerated neurons that were not as strong as the original neurons.
There were a few threads in this forum more than a decade ago re post-polio/post-GBS but the threads had no cites to medical literature re “post-GBS syndrome”. Googling “post-GBS” yields little/no useful info. And, in response to my recent inquiry, Foundation staff have no info re “post-GBS syndrome”.
If Forum members have any info re the existence — or, alternatively, the medically-proven non-existence — of “post-GBS syndrome”, I’d appreciate it if they could share it here.
March 30, 2022 at 6:31 pm
Based on many discussions about it in these forums, I believe there certainly is such a thing as post GBS/CIDP. Most of those discussions were in 2006 with a few in 2020 and some of those can be viewed here:
I have personally not experienced any increased symptoms since I contracted GBS/CIDP/MFS in 2008, and I am now a 78 YO. I make sure to take appropriate supplements to help stave off any return of symptoms while lessening the residuals I still have. Some of my muscle weakness is age related, some due to residuals.
The following paragraph is extracted from an article I found on the Internet: ”Many decades after GBS, recovered muscles once weakened by the disease may again grow weak. This is a slow process that occurs over years, and may at first escape the patient’s notice. It is likely that this delayed weakness is the effect of the normal gradual age-related nerve cell loss on muscles that have a reduced reserve nerve supply from earlier GBS.” You can read the full article here:
GBS seems to affect everyone a little differently when it comes to residuals over time. There is no one-stop treatment for this, but we can make sure we eat right, exercise as much as we can, and replenish certain vitamins that help us moderate the long-term effects of GBS.
John, if you contact either author of the article and learn more about post GBS/CIDP please share the info with us in this thread.
I wish you the best,
April 1, 2022 at 4:57 pm
Thanks for your info, particularly the link to the Kleopa-Brown article. That article is the only recognition I have found by medical professionals of “post-GBS syndrome”. If I learn anything more — from the authors or elsewhere — I’ll definitely share it via the Forum.
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