Neurologist near there

January 30, 2010 at 1:54 pm

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