Residual Effects of GBS and Current Research.

To escape at least part of our winter we have just returned from a cruise to the Caribbean and States. We had a wonderful time and met some lovely and interesting people.

The downside, which seems to be ongoing, is my great difficulty in eating a plateful of normal food and people fully understanding what I am saying. My jaw seems to have a mind of its own!

Whether this is down to the incomplete repair of the myelin sheath (remyelination) of certain injured nerve fibres ie the axons in my body, nobody seems to know. What is now coming to light however, is that incomplete remyelination could have reduced the efficiency of electrical impulse transmission through two of my cranial nerves in the lower part of my head resulting in the jaw and speech problem I am currently experiencing. It will be three years in June since I contracted GBS.

I have recently read that research in the States has discovered that as Dalfampridine can help improve the walking of MS patients by halting the demyelination in the Central Nervous System, it is plausible that it may also help those GBS patients with residual weakness and sensory loss due to incomplete remyelination.

Hopefully this research can be taken forward in the UK with an early clinical trial to determine whether there is any benefit . At present Dalfampridine cannot be prescribed except for MS patients.

I am getting fed up with not being able to eat what I want and having to watch how I eat when I am in company. Also friends understanding what I am saying. Still things could be a lot worse, and I count myself to be lucky how well I have come through compared with some fellow sufferer’s experiences.