Blepharospalm and Meige syndrome


Posted by Carol Brown , Oct 26,2001,16:48   Archive
I was disgnosed with both of the above problems in 1996. It has been an ongoing series of trips to my Doctor for botox injections since then. I did have myectomy surgury on my eyes three years ago which helped some. I would like to chat with someone who has this same problem as I do. I live in Naselle, Washington and do not have any support groups around here anywhere. Would this be possible?



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Re: Blepharospalm and Meige syndrome

Re : Blepharospalm and Meige syndrome --- Carol Brown
Posted by Shirley-Arkansas-USA , Oct 26,2001,20:36 Top of Thread Archive
Hi Carol and welcome to the bulletin board. I've had BEB and Apraxia since 1999. I'm 49 and had to quit my job as an RN when I developed Blepharospasm. I have also had an upper limited myectomy about 6 months ago that has also helped some.
Our bulletin board moderator is from Washington State.
This is a good place to come and ask questions or answer people and just banter with us when we are just chit-chatting. I think everybody is a bit quiet this weekend. I think we are all a little sad with finding out about Mattie Lou Koster's death recently. We are usually a little chattier than this.
You have come to the right place to find people with problems similar to your own. We are all here to support each other. Stick around and join in. Ask any questions that you may have and we will try to offer suggestions or a little advice. You probably can give us some.

Again welcome to the bulletin board which is my support group.

Shirley in Arkansas




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Re: Blepharospalm and Meige syndrome

Re : Blepharospalm and Meige syndrome --- Carol Brown
Posted by Sally - in - Idaho , Oct 26,2001,21:45 Top of Thread Archive
Welcome, Carol. I hope you will find answers to many of your questions here. Several have had myectomy surgery, including Shirley who responded just above here. I have not had. So far, I have the Botox injections every two months and they are fairly effective.

Judy Blackman is from your side of the mountains, as is Grace Anne and a couple of others that I can't recall. I live on the other side of the mountains in the Idaho panhandle near Spokane.

Fell free to ask anything and to join in with comments. Bring along your sense of humor ... it goes a long way toward survival!

Sally in North Idaho BEB/Meige




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Re: Blepharospalm and Meige syndrome

Re : Blepharospalm and Meige syndrome --- Carol Brown
Posted by Kelly Saffell , Oct 27,2001,15:20 Top of Thread Archive
I was also diagnosed with beb/meige in early 1996. My symptoms developed right after I had my first baby when I was 26. I am now 32 with 2 daughters. I quit my job as a cpa 2 years ago and am on LTD. I receive botox in my eyelids and surrounding muscles and in my jaw. I also sleep with a tmj mouthguard at night to help take the pressure off of my jaw and protect my teeth since I clench my teeth so hard at night. I have found an awesome muscular therapist who can actually feel the tiny spasms in my jaw muscles and is able to ease my pain. I take very small doses of klonopin which seems to help some. I live in Dallas, Texas but would be glad to "talk" to you. My email is ksaffell@aol.com. Take care and God bless.

Kelly in Dallas




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Re: Blepharospalm and Meige syndrome

Re : Blepharospalm and Meige syndrome --- Carol Brown
Posted by Alan Phair , Oct 28,2001,21:28 Top of Thread Archive
Carol, I also have Meige syndrome and have had several Myectomies over the last few years. I developed my symptoms in 1996 also and up until my last surgery, botox did not work at all for me even though I took it every 3 months faithfully. If you care to Email me, I would be glad to discuss further with you or I could give you my phone and talk to you if you wish. I am sure that you will get a lot of help from others on this board also as it is a great group of people whose only concern is helping others.....Alan



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