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Posted by: tangles60 ® 04/03/2004, 07:04:34 |
Hi I am a new member, would like to talk to people with this condition.
I have Blepharospasim,Photophobia & cone rod dystrophy, what a trifecta! Any help would be wonderfull. Yes I am from OZ. Kind regards. |
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Posted by: Cynthia ® 04/03/2004, 09:14:02 |
Welcome to the board. I'm sorry that you also have these frustrating disorders, but there IS support here! If you haven't already, you should contact the BEB Research Foundation to receive newsletters. So you are from OZ? Would that be somewhere around UK, NZ, or ??
Cynthia in IL, USA |
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Posted by: tangles60 ® 04/04/2004, 06:31:24 |
Hi Cynthia
Thank you for your welcome. Sorry I should have said Australia OZ is local jargon! The condition I have is causing me great problems personaly and with work, I'm sure you understand. I have had one dose of Botox but ended up with a good bruse under one eye and a droopy eyelid, is this common? I am going to try again this week, after only 2 months as I feel it has worn off already. Kind regards Tangles Syd, AUS |
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Posted by: Cynthia ® 04/04/2004, 14:53:08 |
Thanks for the explanation about OZ ! It's fun learning these new things and am especially enjoying you people from "down under" but wish you didn't have to deal with this BEB disorder! A bruise after Botox is not uncommon and will disappear after a few days. The droopy eyelid means that there was probably too much injected into the eyelid and the dr will probably do better next time. There are several who receive botox every 2 months, so that is not uncommon either. With my very best wishes to you as you join us in dealing with all of this,
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Posted by: Diane in Virginia ® 04/03/2004, 13:37:29 |
Welcome to this bulletin board, you'll find that folks here are very helpful!
Feel free to browse thru others' posts here on this page & previous pages for shared experiences & info. If you're from Australia, "Lyn Down Under" has a post, dated 3/28/04, near the end of this page 1, telling the times for our Chat Room in Australia's time zone. Best wishes, & more next time! Diane Modified by Diane in Virginia at Sat, Apr 03, 2004, 14:08:21 |
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Posted by: June in Toronto ® 04/03/2004, 16:44:14 |
Welcome to the beb bulletin board. I have had beb/meige for 9 years now and get botox injections every 3-5 months - 90 units each time. Tell us more about yourself if you feel comfortable doing so (what is cone rod dystrophy?) and ask any questions you care to and we will try to answer them. You will find this to be a very caring and informative group. Best wishes June in Toronto, Canada |
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Posted by: tangles60 ® 04/04/2004, 06:54:07 |
Hi June
Thank you for the welcome. I have had my problem for quite some time but only found out late last year. Cone rod dystrophy is a genetic disorder of the retina, I only have a mild case at present which is causing me to have light sensativity problems( to do with the cones in my retina)., I belive it will get worse as I get older.My Father was tested and has the same condition but to a lesser degree. If you would like to look at the cone rod web site it will explain in more detail. Blepaharospasm also only found out after all the rest is causing me the most grief. I have trouble with the following; Going to the movies. Driving Talking to others. watching T.V Virtualy any movement. My eye lids feel they are being pulled down by force when I do the above. My bigest worry is that I am a sales rep driving all day and have been for 20 years ,and am worried about loosing my job! Driving into the sun and lights at night also a problem. I hope the next Botox on Wed helps. Kind regards Tangles Syd, AUS P.S do you get a drooping eye lid after Botox also brusing? |
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Posted by: June in Toronto ® 04/04/2004, 21:34:33 |
I have never had droppy eye thank The Lord after botox. I believe my doctor is an expert at these injections (he spends every Wednesday injecting all kinds of dystonia patients) and so far has always injected the correct sites for me. I have though had bruising on occasions - not this latest time though - plus othe rside effects (double/blurred vision, sinus, flu-like symptoms and pain and eye headaches). This time (2 weeks ago) I have only experienced blurred vision n my right eye and the eye headaches and pain. We win some and lose some:-) We beb'ers get light sensitivity from the disease and from botox I believe -so you have a double whammo of it with this retina problem -it must be awful for you. I had to give up my position after 20 years at a university as I could no longer commute, especially during the dark winter months with the driving and light problems, so I understand your dilemma. Do you have short or long term disability if it gets too bad for you at work? For many years I couldn't watch tv, go to a movie or read a book (the latter I couldn't do for 9 years) - now I can do all three albeit the books only recently and they are large print ones. So things do change for the better sometimes - keep your chin up and have faith. God Bless June in Toronto |
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Posted by: Lyn Down Under ® 04/03/2004, 20:26:24 |
Hi and welcome Whereabouts are you - I am in Western Australia Lyn |
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Posted by: tangles60 ® 04/05/2004, 08:19:49 |
Hi Lyn
I am from Sydney,would like to chat regarding this chalenge in my life , I have never had a sick day apart from the odd cold/flu, it is hard sometimes to come to terms with, alot of people do not understand,I am glad I have found a support group to chat to. All of the group O/S would be contacted in the middle of the day this would be hard as I work at these times, maybe a time to suit the group in AUS. Kind Regards
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Posted by: pdb ® 04/04/2004, 00:00:31 |
For those that didn't go to the Sydney Olympics or have other reasons to get the background, OZ comes from the fact that Australians pronounce Australia more like Oztralia than osstralia, hence an Aussie is from Oz etc. And it all precedes Judy Garland and Wizard mvoieds, so we got it first. And there are several Ozzies on the board, not all based in Oz at the moment. Peter from Sydney via Manhattan now in London |
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Posted by: June in Toronto ® 04/04/2004, 06:08:15 |
YOu do get around Peter - must be nice - good on ya (did I say that right? June in Toronto eh? |
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Posted by: Peter from Brisbane ® 04/04/2004, 06:56:20 |
Hello Tangles, You're not Max Walker are you? I've got the double - Blepharospasm and Photophobia. Have never heard of cone rod dystrophy but would like to learn more. I will be having the 3rd lot of Botox injections on Monday 5th April. The first injections fizzled out after 6 weeks. The second set is just starting to fade now after 12 weeks. So they seem a little erratic but I think this is common. For me, the blinking and spasming is pretty much kept under control by the Botox. I can't seem to get the Photophobia under control. I have tried many different types of sunglasses - including polarised and FL-41 but to no avail. I have just been advised to see a functional optometrist who works with people with brain damage. She uses a "Syntonics machine" which apparently does something with red and blue light. I think I will go and see her after Easter. I will let you know how I get on. In the meantime, if anyone knows anything about Syntonics machines, I would be interested in hearing from you. Take care Tangles. Peter |
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Posted by: June in Toronto ® 04/04/2004, 08:11:08 |
I may have mentioned this before - perhaps not, but I take a herbal remedy to HELP with this problem. Its called Bilberry and has been around for thousands of years. A more recent note is that it was given to fighter pilots in WW2 to help with the flashes from the bombs/guns in the sky - to improve their recovery time. I found it took almost 2 years before I noticed the full effects of Bilberry - I've stopped taking it a couple of times (thinking it might be a placebo) and the light sensitivity got worse again each time. It doesn't (for me) cure the problem but helps significantly that I can watch tv, go to the movies and drive short distances during the day. I get a really good quality product from a Naturopath mixesd with lemon balm and gingko. June in Toronto where we are back to winter again! |
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Posted by: tangles60 ® 04/05/2004, 08:29:55 |
Hi Peter I use to sail a bit, I had the missfortune of getting tangled in the rigging one day nearly lost my arm (hence the name).
I have also tried many glasses!!!!But the eye spasims over ride them even when not in the sun. Having another go a Botox on Wed. cross fingers. Kind Regards
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