My name is Lawrence, I am 27 years old, and I live in Romania.
I have been diagnosed with Miller-Fisher syndrome (cranial variant of GBS) twice: July of 2015, and July of 2019.
The first occurrence was significantly more drastic, but after undergoing immunoglobulin treatment, I made a full recovery by November 2015.
The second time, it was milder; I was quicker to notice the familiar symptoms, and I managed to shake them off without immunoglobulin treatment.
My question is, how normal is it for me to feel generally weaker, and less resilient to effort? I do not mean numbness, but a general feeling of lack of strength, as compared to before.
While this may not be life-changing, I was wondering if your experience could help me get a better understanding as well.
Last of all, I want to commend you for your initiative to provide a support framework for people who have suffered from this uncommon disease. I know it’s tough to feel like you’re the least lucky person in a 100 km radius for having suffered from something like this.
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.