Posted by: June in Toronto ®
02/05/2003, 19:18:30
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Hi Pam, welcome to the beb bb. We have another lady post from Scotland - Pippa from The Highlands, who I'm sure will post back to you when she gets back from a trip to NewZealand for her daughter's wedding.You have come to the right place to contact people who know what you are going through and who care. Most of us had trouble getting this disease diagnosed and some find Botox injections don't help much. Others find that getting their movement disorder specialist to change the injection sites, changing the amount of Botox units given and generally working with the doctor as a team, helps a lot. Read as many back posts as you can to educate yourself - you will find many posts that speak of people bumping into things and eyes that close. Perhaps (for now) using a white cane might inform people that you have an eye problem.so that they will move out of the way. It won't hurt to register as a blind person - I know on one lady with beb here in Toronto (Canada) that did and she received a lot of guidelines to help her (whilst crossing the road for instance and safety in cooking) from the Institute. We must do whatever it is to continue with as `normal' a life as possible. I'm sure as you learn more about beb you will improve and if you can elimate stress (easier said than done) that will help you as well. Come back often and share with us as you feel comfortable doing, we've `been there and done that'. Best wishes. June in Toronto (beb/meige 8 years)
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Posted by: Ann Doyle ®
02/06/2003, 14:19:09
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I think I'd hold off on the registering blind until I knew that I would never be able to drive again. It would be difficult to undo the blind bit with any government. Also, you might go into remission..
Do they have Movement Disorder Specialists in your country or someone who has given a lot of different patients Botox for BEB and not cosmetic purposes? The doctor giving the shots can make a big difference.
Are you sure you have Blepharhospasm and not Hemifacial Spasm? Generally speaking BEB involves one eye and HFS is both eyes. If you have HFS there is a surgical cure. It works 90% of the time.
Please don't do anything so drastic until you learn a lot more about it. Ann Doyle
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Posted by: June in Toronto ®
02/06/2003, 16:04:36
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Hi Ann, Just a bit of information - here in Canada (at least in Toronto) the Canadian Nat. Institute for the Blind (CNIB) recognizes BEB. They recognize that you aren't blind with BEB but might need some skills to manage with the disease. A BEB patient can register with them. I just thought that Pam might get some life skills to help her whilst figuring out the best move to make with doctors, etc, if the Inst. for the Blind in Scotland works the same way.June in Toronto
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Posted by: Ann Doyle ®
02/06/2003, 17:34:46
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Thanks June. I have a period of about 4 weeks after Botox wnen I can drive. Then for the next 6 weeks , I can't. Nobody tells me. I can tell and stop. Every once in awhile, I'll have a good period and head for the stores. I have enough warning that my eyes are going bad to get home . I'm glad I have the warning. Ann Doyle
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Posted by: pamg ®
02/06/2003, 16:16:06
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A big thank you to all for your kind words.
Would you advise me on the following points:
1/ I had an EMG which showed up negative. I asked if the test could be done on the eye area but was told no. I have since seen on the BB, in my reading of it, that you do get an EMG specifically around the eyes. Is this correct? I am to get another EMG soon so if the answer is "yes" then I can ask which hospital in Scotland can do this.
2/ My Botox injections were on the forehead, side of and under the eyes. Are these the places normally done as I read about injections on the eyelids.
I am trying to gather info so I have questions for my Neurologist on my next visit. It has been difficult getting info from him so far.Pam
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Posted by: June in Toronto ®
02/06/2003, 16:45:08
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Hi Pam, I can't answer the question about the EMG as I didn't have one- perhaps somebody else can.As regards the injections sites - you really should have a paper copy given to you by the doctor who injects you, indicating the exact sites used. Some doctors have computer diagrams that charts the injection sites and dosages. Everybody will be injected a little differently depending on where the spasms are originating or what muscles are effected. This way, if the injections don't help you, next time around you could suggest the doctor changing them slightly - working as a team to get the best help possible for you. Injections on the nose side of the center of each eye should be injected inwardly or towards the nose. Injections on the temple or outer side of the center line of each eye should be injected outwardly - towards the ear area. At least this is what I've understood from my doctor and from others that know more than I do, on this bb. I get a total of 90 units of Botox (how many do you get - if you don't know as the doctor) and usually 14 injection sites? Best wishes with all of this (hope I haven't confused you). June in Toronto
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Posted by: ClaireW ®
02/06/2003, 17:25:35
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Pam...I had what they call a "single fiber EMG..that is the one that is sensitive enought to pick up muscle activity around the eyes...However only a few people are trained to do it...you would need a dept. in a large teaching hospital I think...
It wouldn't tell you a lot I don't think..only that your muscles are in spasm...for me it confirmed what they already suspected..that my problem was Bleph. and not a ptosis...they had queried Myasthenia Gravis.
Is your neuro a movement disorder specialist? If he isn't I would ask if he could refer you to one...in fact I would insist! They are the guys that deal with all Dystonia's.
Mine gave me a chart of the Botox placements...though it gave me an awful ptosis, so no doubt we will try a different placement next time! I had them the same places you describe.
Best Wishes,
Claire
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Posted by: Alan Phair ®
02/05/2003, 19:38:52
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Pam, welcome and sorry to hear that you are having so many problems with your Blepharospasm. Your situation is very much like many of us on the bulletin board. There are some of us who do not have much success with the Botox. You say that your doctor removed excess skin as a last resort and that did not help. It sounds more like my first operation that I had here in Boston MA.. It wasn't until I had a much more extensive Myectomy done by Dr. Anderson In Salt Lake City that I got some relief. While I am not perfect by any means, I can function a heck of a lot better than I could prior to the Myectomies (I had and upper and lower done). I don't know what is available in Scotland and perhaps Pippa can help you with that but it sounds like you need to try something else. I am in no way trying to diagnose your case as everyone is diferent but the Myectomy is usually one of the "last resorts" and I don't mean one that only removes excess skin tissue and a little bit of muscle. Again, only you know your case and the decisions you make have to be yours but I would contact the Blepharospasm Foundation by clicking the name at the top of the bulletin board and they will send you all the information you will need to help make some decisions.We will keep you in our prayers and please keep us posted on how things work out for you. We all care...Alan
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Posted by: Moderator-JB ®
02/06/2003, 00:14:31
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Pam,A hearty HELLO! from the state of Washington, USA. Hugs abound here, if you need it or not :) A tip on the Christmas, holiday shopping - I use mail order catalogs which usually have an online website attached. Being squished in the sardine can of a large store full of people bent only on finding that very gift to buy their special person, is not much fun for us. Lighting is usually very bright and flourescent (which closes many eyes), people crowded close (excuse me, my eyes shut before running over you), exaustion (always around any corner), movement (closes most eyes) 'Hey, why do you look so strange?' (the general public does not react well to different), 'I'll explain that to you' (stated like they were talking to a 3 yr. old). You cannot do the hundred things that you could before. Do not try to. Kids 5 or 35 can help with some of the work. Let them. Take care and please e-mail any of us with questions or just to chat. The Cyber-coffee pot is usually on. Judy/56 - BEB/Meige/ST+ for 6 years
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Posted by: Ann Doyle ®
02/06/2003, 14:30:44
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I did all my Christmas shopping on the net. It is so much easier. You can get right to the point. For kids--Toys, then boy or girl, then age group and finally type--electronic, book, etc. It isn't as much fun but it sure saves energy.
Judy, you reminded me of the last time I was in the grocery store and a lady said in a real sweet voice--That's OK , honey. She really was trying to be nice and forgive me and I have no idea what I did wrong. Ann Doyle
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Posted by: Christine ®
02/06/2003, 00:53:52
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You have come to the right place for advice. Even though everyone is similar, everyone has a different story to tell as well. My driving has been reduced to only driving for about 5 minutes, to my local shops and not at night. I couldn't watch tv at the beginning, but I can watch a bit more now. I'm sure others will give advice on Botox, ie different injection sites etc. Anyway, there are others out there like you, so ask questions and don't feel alone.
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Posted by: ClaireW ®
02/06/2003, 02:57:53
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Welcome Pam!
I'm Claire...from Macclesfield UK, and was diagnosed with BLeph last may...like you I had tests for Mystheinia..negative...and because of my frown, struggling to keep my eyesopen,look wonderfully stern too!
I 'd love to give a magic cure...there isn't one I'm afraid, but this Bulletin Board is such a good place to come, and feel that you are not alone!
my eyes shut in social situations too...I have resorted to sitting in the pub with elastoplast on my eyelids to keep them open! Can't do it for more than 30 mins or so as my eyes dry out but it's nice to peoples faces occasionally!
I have found that taking Sudafed can help to keep my eyes open...(It has the same ingredients as benadryl in the states...benadryl in UK is totally different...it's mentioned quite a lot on the board here as several people find it helps.) it can push blood pressure up a bit though...important for some people.
Is your neurologist a movement disorder specialist? They are the guys to see....)
Do send off for info from the BEBRF...I just sent $15 cash and got info back within a week...wonderful. Some of their leaflets are superb. Click on the BEBRF lonk at the top of the page and you should eventually get to an "order form"
I find that my eyes will open when I am concentrating on something...I have just taken up Patchwork and Quilting...all done on the sewing machine. I have been to a couple of classes at a local shop and have found the other ladies really friendly..one of them was a training officer for the RNIB
I must admit I have been considering getting help from a local centre for visually impaired...they can help with computer access..spoken software etc...
Do kee pdropping in for Cyber coffee!
Much love,
Claire
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Posted by: Ann Doyle ®
02/06/2003, 14:54:01
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OK Claire, I'll bite. What is RNIB? Registered Nurse in Britain? Rare Neurotic Inbibing in Bourbon? Real Newcomers Information of Bleph? Random Nuisance Insribing on Bulletin Board, Ann Doyle
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Posted by: ClaireW ®
02/06/2003, 15:08:24
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Royal national institute for the Blind....
Claire
PS. I think you got BEB and hemifacial spasm the wrong way round..hemi is one eye...Beb...two..but I know that you know!
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Posted by: June in Toronto ®
02/06/2003, 16:07:22
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On the latest Dystonia D-mail I received, there was a man who lives in Toronto and he was asking questions for his daughter who had hemi facial spasm on both sides??? I've e-mailed him about it.June in Toronto
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Posted by: MaryNY ®
02/06/2003, 21:37:23
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Claire - Finally, another Quilter on the premises! :)) Keep at it! I've been quilting and "Patchworking" for over 25 years, and it definitely helps with the eyes. People think, "How can you keep your eyes open to do that?" But it's just the opposite, because I am looking down all the time, and I am not thinking (stressing) about stuff I shouldn't worry about, so my eyes are fairly good while I'm doing it. Best of luck in your endeavors - it's a terrific, creative and artistic thing to do! And nobody yet has refused a quilt that I've offered to them. Mary
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Posted by: ClaireW ®
02/11/2003, 07:07:26
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Mary..thanks for your reply.I took delivery of a new sewing machine today..my eyes will stay open to sew but not to read the instruction book! At this rate it will be years before I even learn how to thread it!
Claire...in dull and dismal Macclesfield
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Posted by: Carol A. Brown ®
02/06/2003, 13:36:42
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Hi Pam,I just wanted to jump in and also welcome you to the BB. Wonderful place to come. I'm sorry to hear you are having so much problems, but you will get through them. I was diagnosed with bleph/meige 7 years ago but was having problems much earlier. After finally being diagnosed with this, I was referred to a movement disorder specialist who started me on botox treatments. After going to him every three months for 2 years, I finally had myectomy surgery. Believe me, it helped tremendously. I now can go for 5 months or longer without botox. I would recommend a movement disorder specialist if you can get to one. Good luck and come back often. Carol Brown, Naselle, Washington
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Posted by: Kathy in Oregon ®
02/11/2003, 08:45:25
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Pam,
these people on our support group are all giving you very good advice. I think the injection sites are a key here and something that has to be worked with til you get it right. Also , if there are other doctors around, I would consult some of them and ask , also , as mentioned, if they have other patients with beb , as every patient's symptoms can be different and their inital reactions to botox injections, but we all have similar problems. I think there is some difference when you get the injections in the eyelids also. Eye hygiene and moisturizing is lao more important when you get them in that location.
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