Posted by: Delaine Inman ®
01/22/2003, 18:45:53
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Sorry about the ptosis. That is usually poor technique and you need to let the doc know so they won't put it in that spot again. When Botox is working I can't close my eyes and really have to keep them lubricated well and covered to rest and sleep. This is a strange disorder and everybody is a little different. Hang in there and work on sites or get another doc.
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Posted by: Lyn Patterson ®
01/26/2003, 00:47:07
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ClaireThat sounds dreadful. I usually have a VERY slight ptosis that wears off in a couple of weeks. It doesn't cause me any inconvenience except I might look a bit funny. The whole thing starts to wear off in about 9 weeks and I like to have it done again 10-12 weeks max. I know everyone is different but to have a ptosis situation last that long can't be right. Lyn
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Posted by: ClaireW ®
01/26/2003, 02:46:27
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Thanks Lynn
I think ptosis per se may be an issue here....despite the neuro being convinced that all my eye closure was due to Bleph...i think that is only part of the problem.
I notice that by evening my eyes are really droopy. I was tested for Mysathenia gravis..negative.
I go to see my neuro again tomorrow so we will see what he says then!
Wishes,
Claire
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Posted by: Lyn Patterson ®
01/27/2003, 21:11:23
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Hi ClaireI,too, was tested for Myasthenia gravis before I was diagnosed with BEB. Not only tested, but treated for it before all the tests came back. Rather careless as the tablets nearly finished me off!!! until I decided not to take anymore. When I finally went back to the doctor after his LONG holiday he told me I didn't have it and it was just as well I stopped taking the medication !!!!! Then he wiped his hands of me saying I should go back to my General Practitioner !! It can be a long road to a proper diagnosis ! When my Botox is wearing off, as it is now, by night-time my eyes are really droopy. Hope you get some information soon Lyn
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Posted by: ClaireW ®
01/28/2003, 03:03:54
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Well well...what a lot we share. I too was treated for MG with Mestinon and steroids...like you they almost killed me. I was in hospital and had to discharge myself so i could stop taking the meds. Just as well i did!
Saw the neuro yesterday...he confirms what I thought...it is Bleph...just that every now and again different muscle groups decide to spasm.
As he so cheerfully said..(he really is nice by the way i like him loads)..it is obviously a central i.e. brain disorder under Movement disorder group...it is neuro-degenerative..it is obviously variable as these things so often are ...and it may take years before all my symptoms coaslesce into an obvious disorder ...and this is so common for lots of neurology patients...in the meantime...we just treat the symptoms!
So there we are...as long as they treat the right symptoms with the right stuff...as we know from our MG experience!
(By the way..I had a positive tensilon test..did you?)
Best wishes,
Claire
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Posted by: Lyn Patterson ®
01/29/2003, 02:32:22
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Hi Claire
Which test was that? It is so long ago now - about 14 years - that I can't remember the names. The very first thing he did was to hold a pin up in the air and I had to stare at it. Naturally my eyelids started to droop after a while - I think ANYONE'S would - but he was then convinced I had MG. He then did other tests in his office and then I had to go to the University for more tests - they seemed mainly to do with the arms if I recall correctly. It was after all those tests that he changed his mind and said I didn't have it. This happened over a period of about a month I think during which time he went on holiday leaving me taking this medication which nearly killed me !!Glad you have a nice doctor now - so do I - what a difference it makes ! Lyn
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Posted by: irene sieger ®
01/29/2003, 21:21:32
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Claire;
Hi again what eye color of lenses are best for BEB . Im planning to get an eye exam and would like to know what color would be the best.
I had heard something about f1 something. Not sure if they are sold anywhere in my area. Leet me know anybody.Very sensetive to bright light and also on cloudy days as well. I cchange like the weather I have good days and bad days as well.
Let me know
Thank You
Irene
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Posted by: ANNA FUZIE ®
01/30/2003, 00:23:00
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Hello Claire,
It was recommended to me at first dignosis (June 2002) about FL41's and I did buy those from a gentleman in Utah that makes and sells them. They were about $280.00 but then later my botox doctor recommended I try Maui Jim's (Maui Rose colour...he has done a little unofficial study) and I liked those much better. I am not sure where you live but I live in California and most malls carry them in Sunglass Hut and some doctors I have found. I did an internet search. Cost was a little bit less (about a $100.00) and there was a bigger selection. With the first pair...there was no selection and I didn't really care for them. The Maui Jim's (Maui Rose) actually worked better than the ones I initially ordered. For some bizarre (or perhaps it is a miracle but I hesitate to think that just yet) reason I do not have any signs or symptoms of BEB including any phobia to bright lights...sun also. All of my symptoms have resolved and I am currently on my 4th month of no botox and approximately 3 weeks without medication. I hope this helps.
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Posted by: ClaireW ®
01/30/2003, 04:22:22
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I know lots of people on the board find "FL41's"...a pink tinit very helpful. However, the Dystonia Society in the UK printed some resierch where they found that a dark green lens worked well for lots of people...me i went out and bought a variety of sunglasses with different colour lenses...in sheer desperation...I've tried...pink, purple, brown and green...i find the dark green ones best..but that's just me. i think it's worth trying a few ones out if you can and see what works best for you!
Claire...who has a full wardrobe of sunglasses..and a beuriful reversible denim floppy sun hat..denim on one side....pink flowers on the others.
love to you,
claire
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Posted by: Ann Doyle ®
01/30/2003, 06:40:22
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When I got my new perscription glasses I asked that they be coated with FL-41. She said that each lab had its own symbols and what kind of light bothered me the most. I told her flourescent and sunlight. She asked if I wanted them in light, med or dark. I got the light tint. Next time I will try the mediun. They are pink. Ann Doyle
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Posted by: June in Toronto ®
01/30/2003, 10:46:42
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I don't think there is any one colour that is right for beb - its all a matter of what helps the patient. I had my vision glasses tinted green at the top - a BEBRF newsletter seemed to indicate (by a doctor) that green might be more helpful than rose . I have brown wrap-around sun glasses that I use sometimes to watch tv and various others in variable dark shades for the outside lights. Unfortunately its a trial and error experiment and I have loads of glasses to prove that!June in Toronto who hopes that Shirley knows how much she is missed and we pray for better times for her.
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Posted by: dorothy long ®
01/30/2003, 13:39:24
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I had surgery 4 weeks ago, and while I was in Utah I had Dr. Anderson refer me to a eye center that had FL 41 which I am a outside person, so I got the FL 80 and they are dark, but works outside,the cost $40.00. then I had my reading glasses tinted Fl 41, which are pink tinted. There was not charge for them. Like everyone I have a collection of sunglasses expensive and cheap.
dorothy long today above freezing
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Posted by: irene sieger ®
01/31/2003, 22:47:58
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Dorothy
Hi hoping you are doing ok. What kind of surgery did they do to you. Let know how you are doing just hope you get well soon. I'm schedule for Feb 6, at 9:00 for another set of Botox injections again and I really can't wait I been having trouble like never before. I've had better amount of injections the last time but I tell my friends I change like the weather also. I have good days and bad days as well. I've been having lots of eye spasms do beleive that is a side effect. And ususally get a drooping eye and always the same eye. so maybe I'll tell the neurologist not to do above the eyelids. And I'm going for an eye doctor to check my eye sight. I have the really dark lenses but I don't really like them. So I'll ask about the maui rose or maybe the oor fl 41's . See how that will go tomorrow.
Take care
Irene
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Posted by: irene sieger ®
01/29/2003, 19:25:55
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Claire
Have you heard from Shirley she has not gotten on the post replies
just wondering if she doing ok. I would like to hear from her.
Hope she is ok.Wishing you the best on your doctor appt.
I started with droopy eyes at the beginning of my illness.
And now after I get my Botox injections my right eye usually gets droopy.
Take care
Irene
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Posted by: Sally - in - Idaho ®
01/29/2003, 21:32:46
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Hi Irene,Shirley's absence from the board is really noticed, isn't it. She's just going through kind of a low time right now with her eyes and all that's going on. Her dad is about the same, which isn't great and requires lots of attention. The new puppy, however, is more of a handful than she had anticipated and likes to use the older (tiny dog) as a chewie toy, so there are constant demands on her time dealing with them. Plus, I believe she and Maggie are going to puppy school now. Please keep Shirley in your thoughts and good wishes. I'm sure she'll be back with us soon. Sally in North Idaho who debated getting another puppy when our Kelly died last summer, but decided it would be too much competition for Benji. Now I'm glad we made that decision. I wouldn't have the energy to keep up with a frisky little pup.
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Posted by: irene sieger ®
02/01/2003, 21:35:29
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Sally
Thanks for letting me know about Shirley. I will be prayer so that everything will be ok. I really miss her. and I know about her taking care about puppies. I have a dog but when he was a puppy he was a hand full. and now he is all grown up but between my two jobs I have to remind the girls to feed him and change the water. We had a female dog who gave birth to 7 pretty puppies but they all got sick and died, And the mother was taken in by the dog pound because she was the one who was really sick and we tried to bath her and use the medication but nothing help her skin. We miss them all because we get so attached to them that when they hurt you hurt as well. My dog is a part
cocker spaniel and was giving to me from a friend since he was a puppy. we have had him for some years now and full grown now. But he has always been tied down because our area wasn't fenced in and was afraid the cars could kill him. We leave out in the country. We also have a shadlen pony called Jr and he also loves to eat dog food he was so heavy that we were told to get him off the dog food because he was starting to have problems with his legs because he is very short and as heavy . He was ,but now he is doing much better. TAKE CARE IRENE
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Posted by: Lori in Maine ®
02/07/2003, 16:27:37
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HI everyone!
As you can see, I've been looking back over some of the older posts. I'm finally going in on Monday for my second series of injections (first was in August). I had 65 units in 14 injection sites. It took 16 days for my eyes to relax and open and began to wear off in 13 days. My question is...should I discuss more units or different injections sites with neurologist? Thanks for any advice as to how I might play more of a part in receiving the correct treatment.
Lori in Maine
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