September 28, 2019 at 12:13 pm
Hi Lawrence: This is Gareth Parry from the GBS Medical Advisory Board. You are an unusual case. It is rare to get GBS, even rarer to get Miller Fisher variant (MFS) and rarer still to get it twice. There is a condition called CANOMAD that can resemble MFS when it first begins and that is a chronic relapsing disease; i.e., it does tend to come back although the interval in your case was quite long. If it is available to you I would get checked for some abnormal proteins in the blood; there are two types that occur in CANOMAD, “agglutinins” and “disialosyl-GD1b”. The latter will probably need to be sent to a lab on the UK (Glasgow). The head of the lab is Dr Hugh Willison.
Now to your specific question. Fatigue is common following typical GBS. There have been no studies to see if it also occurs with MFS but I suspect that it does. By fatigue I mean a general sense of weakness and lack of stamina which seems to be what you are experiencing. It can improve over time and it is still early days for you so I anticipate that it will do so for you. Rarely, it is persistent. It is important to exclude other causes of fatigue such as anemia, sleep disturbance, low thyroid activity and mood disorder. There is no specific treatment for fatigue but you should continue regular light exercise; short amounts (15-30 mins) once or twice a day rather than pushing yourself to exhaustion.
Hope that helps and good luck with your recovery.