Medical Experts

Hmm! This is a bit odd. It is possible that it is unrelated. For example, if she is diabetic this new problem could be related to diabetes. However, when 2 neurological problems occur close to each other temporally one doesn’t like to invoke an unrelated condition. The 2nd possibility is that she has CIDP rather than GBS and that this 6th nerve palsy represents her first relapse of what is going to be a chronic condition. However, cranial nerves are rarely affected in CIDP. The 3rd possibility is that she has a very rare condition called CANOMAD which can present initially looking very much like GBS but then relapses. In CANOMAD damage to the ocular nerves is common, that is what the “O” stands for. There is a specific antibody test that can be done to look for that; it has to be sent overseas but it is certainly worth considering that possibility. Regardless of which of these it is you need to get back to see a neurologist. There is simply not enough information for me to be able to tell what is going on. If it is an unrelated condition there is not much to worry about because almost all 6th nerve palsies get better but if it is CIDP or CANOMAD the condition will need specific and probably long term treatment. Please take this information to your GP and get a referral to a neurologist, hopefully the one who saw you for the initial GBS.

I suggest you try to get an appointment with Dean Kilfoyle. If you are a former patient of Dr Willoughby I don’t think you need to go through your GP. Just call the Neurology Department and tell them you were a patient of Willoughby and your CIDP is relapsing and ask for an appointment with Kilfoyle.

Hi Mandy: All sounds pretty scary for you. I am not sure what is going on but I can say with confidence that it is not GBS. The cardinal manifestation of GBS is paralysis. While some of your symptoms such as pain can occur with GBS it would not occur in the absence of paralysis. There are a number of infections that are spread by mosquito bites such as dengue, zika and others which are extremely unpleasant and can cause many of the symptoms that you describe but are ultimately benign in the vast majority of people affected. I wonder if that might be what you have experienced. I urge you to talk to your doctor about it. It is impossible for me to make a confident diagnosis without seeing you. Gareth

Hi Richard: This is Gareth Parry from the Medical Advisory Board. Sorry I did not reply to this sooner. This is an unusual symptom and I am not sure what is causing it. If one interprets the symptoms as pain there are lot of options such as amitriptyline, nortriptyline, gabapentin or pregabalin. It is early days; only 6 months out at the time of your question so hopefully it has improved and will continue to do so.

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.