Medical Experts

Hi Sabine: At the regional conference of the GBS (NZ) Support Group today there was a very good lecture from Dr Kilfoyle on just his topic and some lively follow-up discussion. Over 1.1 billion doses of COVID vaccine have been administered so far and there have been only 2 cases of GBS occurring in the 6 weeks following the vaccination, neither of which had had previous GBS. The expected number of GBS cases that we would expect from chance alone would be about 1500 so we can say confidently that the vaccine does not trigger GBS. The vaccine should not affect your husband any differently from any normal person getting the vaccine. Gareth

Pain in the toes can certainly be from neuropathy and can be an after-effect of GBS. A lot depends on the nature of the pain, when it occurs, what (if anything) makes it better or worse and other factors. It could be managed by your GP with medications such as nortriptyline, gabapentin or pregabalin or you could try to get seen by a neurologist in Auckland. Unless you go in private you can’t really choose a specific neurologist. Gareth

No Jeanine, neither CIDP nor the medications you mention can cause problems with your teeth. Gareth

Hi Ingrid: The symptoms you describe are all quite common in patients who have had severe GBS. The nerve damage that developed during the acute attack can take a long time to heal and, unfortunately, is sometimes permanent. Although it seems a long time to you, in fact it can take more than a year to achieve maximum recovery so I would expect continued improvement for a while yet. There are a number of different treatments available for the pain so talk to your doctor about that. Fatigue is one of the commonest and most debilitating of the GBS after-effects and I will leave that for Dr. Suzie Mudge, a neurophysiotherapist who is a member of our Medical Advisory Board and an expert on fatigue management, to address (see below). Gareth.

The fatigue is related to your GBS in two ways. Firstly, when you lose muscle mass, you have less strength and remaining muscle fibres can get overworked leading to muscle fatigue because the muscle can’t maintain repetitive force because its energy is depleted. This kind of fatigue recovers quite quickly so after a few minutes rest, the muscle can work again. This type of fatigue improves with strength and endurance training.
The other type of fatigue is more generalised and is very common after GBS and can be quite persistent even some time after recovery. There is evidence in other neurological conditions that this type of fatigue can be improved with regular physical activity and there is a small amount of research that makes us think the same might be true after GBS.
In terms of guidance for starting or increasing exercise after GBS, a cautious approach is needed so that you don’t make fatigue worse. Choose an activity that you like doing (e.g. walking). Start gradually and increase as you can by watching your symptoms. When you increase your activity, just increase one aspect at a time: frequency (per week), intensity (how hard you are working), time (duration of each exercise session). If possible, this should be done under the supervision of a neurophysiotherapist who can provide guidance to prevent over doing it. Dr. Suzie Mudge.

Hi Martina: So far, there have been over 20 million COVID vaccines administered worldwide and that number is increasing rapidly and yet here have been no cases of GBS or exacerbation of CIDP. It is not because people have not been looking; there have been close surveillance programs specifically looking for these complications. It can therefore be stated with confidence that the benefit of the COVID vaccines far outweigh any miniscule risk. As a frontline healthcare worker you are at a higher risk than the general population of being exposed to COVID, making it even more important that you protect yourself. I would also recommend that you reconsider your decision to avoid the flu vaccine. The risk of these vaccines is close to zero and in your work as a healthcare professional you will be exposed to the flu virus on a regular basis. As with the COVID vaccines, the benefit of flu vaccines far outweighs any risk.