Posted by: moira.gleed ®
07/12/2012, 10:39:57
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Thank you for that information, June. I was diagnosed with ocular rosacea by a dermatologist a few months after I was initially diagnosed and treated for blepharitis. Apraxia followed within weeks. I had and still have many of the symptoms described in your email, e.g photophobia, extreme dry eyes, little lumps on the rims of my eye lids etc. A consultant in my local eye department said Botox might help as I might have BEB and commenced treatments which went on for 6 months before he said he was not prepared to give me any more as it was not helping and he thought my problems might be psychosomatic. I was not prepared to accept that, although a neurologist and pain consultant agreed. I went on the recommendation of Liz (UK) to a consultant who is used to BEB patients and began again with Botox. Botox does seem to help (albeit relative help) but was treated with utmost respect and sympathy for a condition which the consultant and the injecting specialist confirm is BEB, they say it's known to exist but just why, how etc is unknown and a cure is unavailable at present. I was told I have two separate conditions - extreme dry eyes and a neurological complaint resulting in BEB with Botox worsening the dry eye. I am considering starting up a Blepharospasm group in the North Wales (UK) area and will be contacting Liz(UK) (my saviour!) in the next few days to ask about how she started her support group up. Sorry to have gone on and on (!) but hope it may help new contributors to the site. Regards to all. Please keep up the remarkably good work everyone does contributing to this site. It is no exaggeration to say it can be a lifeline. Moira
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