Marguerite. I saw your post with interest. I joined the US and UK boards in November 2004 with a post called “GBS relapse?” as I could not understand what was happening to me. I contracted GBS in 1990 the age of 51 , got back on my feet by 1994, and was walking 6 mi. by 2001. Pain and limited function have been my constant companions (as it has with many of us), but by 2004 I was beginning to notice that my function was apparently degrading at a faster rate than could be explained by the natural effects of anno domini. I saw two neurological consultants with inconclusive results, then had the good fortune to be examined by Professor Richard Hughes of Guy’s Hospital London, arguably the foremost UK expert on GBS and peripheral neuropathy. He is a man for whom I have the greatest respect. He diagnosed acute motor axonal neuropathy (AMAN), which has symptoms that are allied with PPS.
I agree with the comments already made on this post, the sad thing is that the possibility of these after effects were not communicated to many of us when we first contracted this illness, in my case 16 years ago. Possibly because the medics did not know: after all medical science has moved on a great deal in the last few years.
In my case I made a conscious decision at the outset that I would fight this illness every step of the way. It got me back on my feet again when the advice given to me at the time was to accept the permanent offer of an electric wheelchair, but in retrospect it seems that I may have put too great a strain on my body by my determination to get back to being as “normal” as possible again.
In the last couple of years I have seen a gradual decline in my muscular system, particularly in the back and shoulders. In other words, the “concrete overcoat” that I have been wearing post GBS is inexorably getting heavier, and the rate of deterioration appears to have increased this year.
This post is not a moan: I do not regret the decision I made in the slightest. I chose to fight and I would do the same again, but to those of you out there who are long-term GBS patients these words may give you some food for thought. Having said that, for all I know this degradation may have happened anyway even if I had not pushed my body to its limits. I shall probably never know, but at the age of 67 I care not. I shall keep fighting, because I know no other way to be true to myself.