GBS and Ageing

Nice to meet you, Jim.
Post GBS problems are becoming more and more recognized. I don’t know if you would call it an ageing issue or not. But I bet you start getting replies with stories of exactly what you are going thru from others here. Good luck.

Hi Jim (and good to see you again Alma),

I have been wondering what is normal for ageing vs. GBS ageing. My family keeps saying I am just getting old (52). I can’t help but think, NO this is not normal for my age. Haven’t been able to find a neuro that will look at me like a real patient that needs advice, understanding and compassion. The last one I saw said my problems were psychological and recommended I see a psych doc. I did and I’m not mental (a little bit though :p ). Still wishing I was like I was before GBS – 14 years ago. I experience daily fatigue and days when I can barely get out of bed. Just got a new job that I am praying I can keep. I will need to travel some and am really scared about holding up for big meetings.

Well wishes to you and all of us!

Hi, Jim. You are very unusual in having had GBS three times and as a child (first at 8 years old–it appears). In reading this forum for 2 1/2 years or so, there are reports of people having very late symptoms from previous effects of GBS (or less frequently, CIDP that is now in remission). When you have these periods of weakness, think about if there is any associated common event–such as fever or a cold/inflammatory process or that you have done a lot of a particular strenuous activity. This might not give you an answer, but it might give you a clue. It seems that there can be holes in the nervous system strength that may not manifest as symptoms until later in life or until specific challenges are made to those weaknesses.

I hate to say it, but there may also be a tiny chance that what you had was not GBS times three, but CIDP that remained in remission for the next four decades and is now acting up again. There are some people with CIDP who have a relapsing/remitting course and not a progressive one and there are definitely people that have a second or third episode of GBS/CIDP separated by a great many years. So, it does seem wise to check this out.

I have attended a GBS/CIDP support group in Dayton, OH. One of the first speakers was Dr Alan Jacobs from Dayton. Search for the thread “Notes from talk of Dr Jacobs, Dayton, OH chapter meeting” or search under threads started by me (withHope). He is not in Cincinnati, but not so far away and having a good neurologist is worth a drive. Bill Werling is the chapter liason for Dayton and he could give you more information. I will PM his contact info and that of your local liason, if you do not have this information.

I would also like to add that another member recently reported having myasthenia gravis with episodic muscle weakness and this may also be worth thinking about. It is an autoimmune illness also, but one in which the damage is against the interaction of nerves and muscles. When someone has had one autoimmune illness, there is a greater risk of a second one.

I hope that this helps you,
WithHope for a cure of these diseases

Hi Jim, Alma, Chrissy and Hope!

I had GBS when I was 4 in 1958. I found a neurologist here in Montana who had done some work at Mayo, and saw him last week. I have no strength in my feet and lower legs, particularly the right side. He told me I did have weakness, but was reluctant to make a diagnosis until I had an EMG. Which I had wed (10th Feb).

I have extensive neuro damage in my feet and lower legs. All the muscles he tested were way below normal.

I am 55 now, but having quite a few Post GBS symptoms. I am having total hip replacement on the left side March 1. I had the right hip done 2 years ago.

My orthopedic surgeon said I had a “congenital” hip deformity with bone spurs upon bone spurs. I also discovered that joint contracture is common in GBS patients, especially children, so my super high foot arches, supper skinny calves and hip problems may all be related. 😎

Chrissy, fatigue is a big problem post GBS! There is some published literature about that. I will get that info and post or paste it here.