Medical Experts

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.

You have some features that suggest a possible diagnosis of multifocal motor neuropathy (MMN), sometimes referred to as Parry’s syndrome. You have a pure motor disorder that began in the hands and you deteriorated during treatment with steroids (prednisone). However, the symmetry of involvement and the more recent involvement of the legs would be unusual and are more in keeping with a motor-predominant variant of CIDP. Motor predominant CIDP can also deteriorate during steroid treatment. Both CIDP and MMN improve with IVIg. Regardless of the correct diagnosis I would definitely not continue with steroids. They are more convenient and a lot less expensive than IVIg but the fact that they caused deterioration once already makes it highly likely that they will do so again.
This advice is given based solely on the information provided through this website. Consultation with your neurologist is essential to to follow up on this advice.

Unfortunately fatigue and pain can be long term sequelae of GBS. In one study more than 80% of patients had residual fatigue even years later.. There is no simple solution. There are a number of medications for pain management but they all can make the fatigue worse. Daily light exercise, starting with just a few minutes walking or biking and slowly increasing can reduce the impact of the fatigue. It is important to have your doctor check for other causes of fatigue such as anemia and low thyroid hormone. Sleep disturbance from sleep apnoea can also cause fatigue.

The numbness in your feet is a very common problem in people who have had GBS and it will improve. It is possible that some minimal numbness will persist permanently. Unfortunately. there is nothing that can be done about it. Not sure about the tight feeling in the pelvis. If abdominal and pelvic muscles were weak during your GBS this could just be the nerves recovering. If so, that too will improve. A medication like gabapentin may reduce the symptom but it has the down side that it could make you sleepy and dizzy so that risk has to be weighed against the possible benefit. You could talk to your GP about possibly trying gabapentin.

These are not symptoms of either GBS or the chronic variant, CIDP.