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| Looking for a BEB specialist in the UK |  | ||
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Posted by: gleemo ® 09/02/2009, 08:23:58 |
Can anyone recommend a name/names and/or hospital which specialises in BEB, please, in the UK (preferably NHS)? |
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Posted by: racl ® 09/02/2009, 08:54:05 |
Where abouts do you live? I'm in Shropshire and see a fantastic Neurologist called Dr Piers Newman - he has both private and NHS patients. I was functionally blind for nearly a year, despite injections every month, until I found him. I have now been back at work for two years with hardly any symptoms as long as I get my 3 monthly injections. Good luck in your search, Rachel |
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Posted by: gleemo ® 09/02/2009, 09:47:35 |
Oh, Rachel! Hello! Its good to be in touch. I live in Froncysyllte, between Chirk and Llangollen. If you could get back in touch I'll be very pleased to hear from you either via the bulletin board or my my email adress moira.gleed@yahoo.co.uk
Regards. Moira |
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Posted by: gleemo ® 09/02/2009, 09:59:52 |
Did you have similar symptoms to me, I wonder. Several months ago I experienced dry eyes and then they developed into itchy, red and sore eyes. For inexplicable reasons (as I thought then, in my innocence!) my eyelids started getting excessively tired and desperately heavy to the point that I just couldn't open them. I suppose I am lucky in that I have been diagnosed fairly quickly (but I am concerned that it may have been too quick a diagnosis by a doctor in the opthalmic consultant's team) without any tests whatsoever, just a "Ah yes, you have blepharitis - we can deal with this very simply with botox and if that doesn't work we'll do a blephaplasty" All terminology alien to me at that time. Could you advise if you were referred to a neurologist initially or was your introduction to Dr. Piers Newman a happy co-incidence? So glad to hear you have had a happy result and that it continues for you.
Kind regards. Moira |
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Posted by: racl ® 09/02/2009, 11:23:13 |
Hi Moira, Your story sounds quite familiar although from what I understand Blepharitis is an infection and different to Blepharospasm. Is this just a mix up of terms or is there another underlying problem? When my problems started my GP and I thought it was hay fever causing photophobia and dry eyes and so I spent a few months with eye drops and creams, but my eyes were spasming and closing so much that I couldn't work and had to hold my eyes open. It was only because my GP started to search in his own time that he found BEB on the BBC website and when I next saw him he showed me the site and asked what I thought. To cut a very long story short I saw 3 different Optometrists in Wolverhampton who injected me with Dysport every month without any improvement. In desperation I went back to my GP who again researched and found me Dr Newman at the Princess Royal in Telford. Dr Newman didn't have much experience (if any) with BEB but was happy to listen to me and conducted a few tests - squeezing eyes closed etc. I had taken along a few pages from the London Botox Centre website (Dr Marion) and said I wanted to be injected in these places please. He read them, said he'd give it a try, and it's all been briliant for the past two years. I can email you his secretary's number if it helps. Rachel |
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Posted by: gleemo ® 09/03/2009, 14:49:54 |
Heloo, Rachel. Sorry, you are right - I'm getting my "itisses" mixed up with my "spasms".
Your history relates so well with mine. I would be very glad to have the phone number, please. Moira |
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Posted by: racl ® 09/03/2009, 14:58:17 |
Hi Moira, Ask your GP to put you in touch with Dr Newman at Princess Royal Hospital, Telford (01952 641222) and see if he can help. Good luck. Let us know how you get on. Rachel |
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Posted by: gleemo ® 09/03/2009, 15:01:06 |
Will do and thank you. Moira |
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Posted by: nilda in Virginia ® 09/08/2009, 11:54:31 |
Dr. Marie-Helene Marion at the London BTX Centre is an excellent neurologist and injector. I met her at the BEB support group meeting in Littlehampton. Several of the patients in attendance are her patients and swear by her. Follow the link I've attached to get to her website. I believe she treats patients at another location besides the London office. Keep in mind that if you can get to a good injector, it's worth traveling there. Nilda Rendino
Related link: http://www.londonbtxcentre.co.uk/neurology.htm |
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Posted by: gleemo ® 09/09/2009, 10:30:43 |
Thank you all for your contact details and such useful information. Will see how I get on with the opthalmic consultant on Thursday 11th and request a referral to a neurologist of my choice - need to see how the meeting goes - have a list of things I need to cover with him. Moira (not really looking forward to the appointment but I know I will come away with more information than I have at the moment about my particular situation) |
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