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Posted by: JBHASLAM ® 02/08/2010, 06:10:50 Edit |
Hello all,
I was diagnosed with this condition BEB over two years ago but it was coming on for longer than that I realise now. I took the route that many did with eye clinics, neurologists then movement disorder specialist, searching for an answer to what on earth was happening to me. I'd had 6 lots of injections up to last November with very little improvement. My eyes have been functionally shut for two years. I walk with a white stick and feel my way along walls around the house. Any movement brings on intense spasms. I was advised by folk on this board to change doctors after three goes without success. This I was reluctant to do as I thought I was seeing the best in the country. If the shots didn't work, it must be me!! Last visit, I took along the print out suggesting position and dosage of sites (M. Stacey sent from BEBRF Society). I was told at the hospital that they have their way and couldn't accommodate me. I went ahead with the shots and the spasms eased a little for 2 weeks. I consulted a different specialist at a different hospital on Wednesday. She recognised the condition instantly and suggested that I was a classic case. (I'd been told previously that I wasn't!) I had my shots later that day. Ouch, they hurt! They were very close to the lash line and I'd not experienced that before. (Peter, she called them pretarsal by the way!) On Saturday, my eyes opened for the first time 'normally' since I can't remember when. I am experiencing some side effects, blurred vision, dizziness, slight head ache and they don't close completely. I am daring myself to be excited but am naturally cautious as I don't know how long it will last. I travelled in the car on Saturday and could see out of the window. It's a grey miserable day here but I'm actually seeing properly and filling my eyes with wonder. You were right! I thought I was just a severe case and have recently been exploring damage limitation! To think that it can work for me is amazing. It might not last long but I now know that it can! I've not posted recently as I couldn't see the screen. It was so frustrating. I need the board for so many reasons, mostly encouragement and emotional support. Technical advice is also extremely valuable. My husband can again see into my eyes. He's been more tearful than me - for now! I've got bated breath just hoping that this will last. Jane (UK) |
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