GERALDINE OF BOSTON
  Archive
Posted by: GERALDINE ®

06/19/2003, 16:12:49
Author Profile Mail author
Hello everyone I am new to this website. Three month's ago my eyelids fluttered and three day's later they were jammed closed;not to be open by hand.It took six weeks to find a dr. who knew what disease was.I have just finished my second round of Botox and there is a slight improvement.Is there anyone out there who is back to normalcy? Dr's don't seem to know"when"...any information will appreciated. Thank you.






| Recommend | Alert   Previous | Next | Current page
Replies to this message


Re: GERALDINE OF BOSTON
Re: GERALDINE OF BOSTON -- GERALDINE Top of Thread Archive
Posted by: Mike in Van ®

06/19/2003, 16:53:22
Author Profile Mail author
Hi this is Mike's wife Chris we just got back from Mike's 5th or 6th botox shots since Dec. He's still waiting for them to work. We are going to a movement disorder clinic in July. There is a lot of info on this bb. Mike was diagnosed in Dec. with idiopathic blepharospasm. He's always blinked a lot however by Sept. of last year it became worse and by the end of Oct his eyes had shut completely. Reading all of the back posts really provides a lot of info about drugs, surgery, etc. We have heard that it can take up to a year for the botox to work. Hang in there and keep researching. Chris and Mike






| Recommend | Alert Where am I? Original Message Top of Thread Previous | Next | Current page
Re: GERALDINE OF BOSTON
Re: Re: GERALDINE OF BOSTON -- Mike in Van Top of Thread Archive
Posted by: GERALDINE ®

06/19/2003, 17:23:11
Author Profile Mail author
DEAR CHRIS AND MIKE THANK YOU I am currently at a movement disorder clinic in Boston and have started Botox treatments.Slow progress Will keep in touch Geraldine






| Recommend | Alert Where am I? Original Message Top of Thread Previous |   | Current page
Re: GERALDINE OF BOSTON
Re: GERALDINE OF BOSTON -- GERALDINE Top of Thread Archive
Posted by: June in Toronto ®

06/19/2003, 19:00:14
Author Profile Mail author
Welcome to the BEB bulletin board, Geraldine, but sorry to hear you have this disease/disorder. I've had beb/meige for over 8 years now and get botox every 3-5 months - 90 units now each time. It took several doctors (which seems the norm) and a long time before I was diagnosed. It often takes some people quite a few sets of injections before the doctor gets the unit dosage of botox and the injection sites correct for you, the patient. Many people are also on medication to help as well. There seem to be some people who live a reasonable `normal' life with beb and others who are very handicapped from the limitations it poses on them - we all vary. Keep posting and learning. Best wishes

June in Toronto







| Recommend | Alert Where am I? Original Message Top of Thread Previous | Next | Current page
Re: GERALDINE OF BOSTON
Re: GERALDINE OF BOSTON -- GERALDINE Top of Thread Archive
Posted by: Lynn Yarbrough ®

06/20/2003, 12:15:35
Author Profile Mail author
Hi, Geraldine. I also was living in Boston when I was first diagnosed (in 1990, after struggling with the condition for 30 years) -- we probably have the same Dr.

While Botox has been a lifesaver for me, returning me to something near normalcy, it was at least two years before we found the right dosage and injection sites for real effectiveness. I am currently getting about 20MU per eye, 5 sites per eye, every 6-7 months. The weeks before and after my shots, I can't drive safely, but 11 months of the year I can and do drive all over.

You will find yourself making a lot of adjustments in your life activities as you go through this journey (early on, before I was diagnosed, my wife had to drive both of us to the hospital to have our second child.) You will get frustrated by your inability to do seemingly simple things. But you have the strength to adapt to -- even to do well in -- your new situation.

Most important is to make friends in a place like this, where everybody has some experience to share with you, where you cah try out new ideas and find new solutions to new problems. Yes, there are lots of people who share your anger and frustration. There are also lots who will share your victories with you. Stick with us.

--- Lynn







| Recommend | Alert Where am I? Original Message Top of Thread Previous | Next | Current page
Re: GERALDINE OF BOSTON
Re: GERALDINE OF BOSTON -- GERALDINE Top of Thread Archive
Posted by: Shirley-Arkansas-USA ®

06/20/2003, 13:25:31
Author Profile Mail author
Hi Geraldine.
Welcome to our bulletin board. I'm glad that you found us. Blepharospasm can be a very scary thing, especially when you don't know anyone else who has it and many doctors are unfamiliar with it or the treatment options. We can help with that.

I guess that I'm a little surprised that yours came on so quickly and then so severely. I think that most of us had a fairly gradual onset (I could be wrong)before things got really bad. Common first symptoms are light sensitivity, dry eyes, eye irritation, and blinking more frequently and longer. If your symptoms did come on so suddenly and severely, I would question whether there was a cause that triggered it. New medications, an accident, severely dry eyes or a conjunctivitis. But everyone is different and there may not be a specific cause for your Blepharospasm which is the case for most of us.

Geraldine said:
Is there anyone out there who is back to normalcy? Dr's don't seem to know"when"

Shirley says:
You may never get back to normal. Botox works to varying degrees for each individual and varies with each doctor that you might use as they all inject a little differently. For some people, botox works great and they can return to normal activities within a few days with only slight symptoms until they start to need botox again and others get very little relief from the botox. Botox just relieves the real tight, painful squeezing for about 2 months for me but during this time, I will still have eye closure and difficulty getting my eyes open. I still have symptoms but they are not as severe. In some cases, Blepharospasm just goes away or goes into remission. This doesn't happen often, though. I personally think that when that happens, there was a specific cause or trigger for the Blepharospasm and when the "problem" is resolved, the symptoms go away.
Anyway, welcome again and feel free to ask any questions that you have. Many we can answer and some we can't.

Shirley in Arkansas BEB/Meige/Apraxia/post myectomy/age 51







| Recommend | Alert Where am I? Original Message Top of Thread Previous |   | Current page