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In hospital Jennie was regulalry reviewed by counsellors as two of the side effects of GBS are strong emotional reactions and fatigue.  Whilst the later is not too much of a problem, the euphoria of trying to return to a more nornal life is proving difficult with Jennie very emotional when she meets friends she has not met for some time, or visiting previously familiar places.  This is normal with the rehab hospital providing support if required.  But a trip to grandchildren in London brings the realistion that she has not made that journey for eight months.


The past year has rushed by with Jennie acclimatising herself to life outside hospital and to her new home. Progress, whilst slow has been positive inasmuch as she can now lead a more or less normal life apart from
a) her speech not feeling ‘natural’
b) ongoing difficulty in chewing
c) her tongue feels too big for her mouth and presses against the insides of her upper and lower teeth
d) Her jaw is ‘out of alignment’ and feels very stiff
e)discomfort and cold sensitivity on her back teeth on both sides, giving Jennie semi permanent toothache, her dentist is unable to explain and
f) hands which are permanently uncomfortable

Her Maxillofacial Consultant has told her that all these symptons are explicable in terms of her GBS and that Jennie’s case is rare inasmuch as her proprioception has become altered in relation to her mandible and masticatory muscles.
In other words the nerves that fire up the muscles that supply information about how she should move her jaw up and down are still damaged giving rise to the overall discomfort and frustration about eating and talking normally. All this she says ‘is now slightly annoying’.
However he still feels there is room for improvement in these areas and that there is no underlying problem with her teeth.
As with all sufferers of GBS we have come to realise that one has to be patient and that hopefully next year will see some further improvement in her mouth-jaw and speech, and her hands.
So little is known about this condition that always we are told that any cure is in the hands of nature and that no treatment is available or appropriate.
Slowly slowly…..


December 2010
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