Meige's Disease


Posted by Gisela Rentmeister ® , Mar 04,2002,16:02   Archive
Anyone out there with Meige’s Disease, could you please contact me directly to share and compare symptoms? I find that different people seem to have different symptoms and I would like to figure out why this is so…

I have suffered from Meige’s for almost ten years now. Contacting me would be really appreciated.

--modified by Moderator-JB at Mon, Mar 04, 2002, 17:59:03




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Re: Meige's Disease

Re : Meige's Disease --- Gisela Rentmeister
Posted by Delaine Inman ® , Mar 04,2002,17:10 Top of Thread Archive
Why people have different symptoms and different degrees of symptoms is the question of the century for any form of dystonia. I have only mild symptoms of Meige which are worse after Botox to the eyes. I have 3 people in my group who have Meige so bad they say their BEB is way down on the list of worries and all three have various types and degrees of symptoms. All three get much worse with increased fatigue and stress just as any of us with BEB will attest. All three have different ways of coping. One carries a small cold pack and rubs on her face, one says a glass of wine in the evening helps, one says continuing to work helps. It is just a mystery. All three go to movement disorder specialist, take Botox and medications.



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Re: Meige's Disease

Re : Re: Meige's Disease --- Delaine Inman
Posted by Ann Doyle ® , Mar 05,2002,08:00 Top of Thread Archive
It's hard to separate Meige from everything else and it keeps changing. Sometimes my mouth moves a lot. I look like I'm going to whistle or snear. Talking makes it go away so I can still work at the information desk at the hospital without scaring people. Sometimes my throat contracts or I have trouble swallowing or I clench my jar untill it is sore. Of course my eyes shut. My mouth is dry--could be the meds. Ann Doyle



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Re: Meige's Disease

Re : Meige's Disease --- Gisela Rentmeister
Posted by Kelly Saffell ® , Mar 05,2002,08:53 Top of Thread Archive
My biggest problem is that my jaw clenches. I receive botox in the mandibles every 3 months to weaken the muscles and I sleep with a nightguard to keep the pressure off of my joints and protect my teeth. My throat also spasms making it hard to swallow sometimes. When I chew, my eyes close completely - that just started several months ago.



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Re: Meige's Disease

Re : Meige's Disease --- Gisela Rentmeister
Posted by Alan Phair ® , Mar 05,2002,09:49 Top of Thread Archive
Gisela, I have had Meige Syndrome almost from when the Blepharospasm was first diagnosed. I can tell you though that it has gotten much worse over the last few years and I don't know if it is a natuaral progression or if the Botox or various Myectomies I have had have anything to do with it. While my eyes close now more due to the Apraxia, I do have a lot of problems with my jaw, mouth, chin and neck. I can tell when the Klonopin wears off as my chin will just clamp tight to my chest and I have trouble talking or eating. The medication does help especially if I watch myself and don't get overtired. Sometimes I think that the Meige part is worse that the BEB. Actually from what I understand, the term Meige actually included someone who has BEB plus the facial dysonia and they go together although you can have BEB without Meige the reverse is not true.

I do get injuections in the neck and jaw areas. I still get them from the same Dr. who gives my my eye injections. I have thought about a movement disorder specialist but I am not sure if I want to be going to two different doctors for my injections. Are there others out there who do this? Anyway, good luck. This disease is not fun and we just have to learn how to cope with it as best we can. As Delaine had said, the actions vary from patient to patient and you will find some on this board that will be mirror images of your symptoms. I know that Delaine Inman and Shirley Barr are very similar in cases with me as I think is Don Peasleyalthough Don was diagnosed much earlier than I. There are some great people on this board and they will help you. I know they have me....Alan




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Re: Meige's Disease

Re : Re: Meige's Disease --- Alan Phair
Posted by Ann Doyle ® , Mar 06,2002,06:30 Top of Thread Archive
I go to a Movement Disorder Clinic and the same doctor gives me my shots around the eyes, the jaw and the neck and the forhead 14 shots. He does a good job. He always talks to me first to find out what is going on and where I need them. Ann Doyle



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Re: Meige's Disease

Re : Re: Meige's Disease --- Alan Phair
Posted by Kelly Saffell ® , Mar 06,2002,09:17 Top of Thread Archive
I see 2 different doctors and it is a pain but it is worth it for me. A movement disorder specialist diagnosed me and still injects my jaw for meige and prescibes my klonopin. She did my first set of botox for beb and it was horrible. She only injected the 4 corners of the upper and lower lids. I turned as purple as kale and it hurt so bad I cried for 20 min afterwards. (And I thought natural childbirth was bad!) And, after all that, they didn't work AT ALL. She is a highly recommended specialist and I trust her knowledge completely but I just can't make myself go back and give her a second chance with the beb. I love my opth who injects for the beb and while I'm a moderate responder to botox, his shots work the best out of the 3 doctors I've been to.



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Re: Meige's Disease/Kelly

Re : Re: Meige's Disease --- Kelly Saffell
Posted by Kathy in Atlanta ® (kathy,Kathy in Atlanta), Mar 08,2002,06:57 Top of Thread Archive
Geez Louise, Kelly! That hurt me just with your description. Did she really think those sites were the best for your problem?

--modified by Kathy in Atlanta at Fri, Mar 08, 2002, 06:58:32




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Re: Meige's Disease/Kelly

Re : Re: Meige's Disease/Kelly --- Kathy in Atlanta
Posted by Kelly Saffell ® , Mar 08,2002,09:20 Top of Thread Archive
I guess she did but she wasn't doing me any favors, that's for sure!



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Re: Meige's Disease/alan

Re : Re: Meige's Disease --- Alan Phair
Posted by Kathy in Atlanta ® (kathy,Kathy in Atlanta), Mar 08,2002,06:53 Top of Thread Archive
Will Shirley ever be back here??



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Re: Kathy-I keep trying

Re : Re: Meige's Disease/alan --- Kathy in Atlanta
Posted by Shirley-Arkansas-USA ® , Mar 08,2002,09:13 Top of Thread Archive
Yes, I'll be back. I keep trying and then something else happens. I managed to catch the flu (yes, I had a flu shot). My dad and brother and sister-in-law all got sick, too. I still have a little fever but went to the doctor yesterday as I appeared to be getting a secondary infection and she put me on antibiotics. Hopefully, I recover nicely now and be around to play my "mother chook" role or something.

Shirley in Arkansas with BEB/Apraxia/Flu :-)




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Re: Meige's Disease/Gisela

Re : Meige's Disease --- Gisela Rentmeister
Posted by Kathy in Atlanta ® (kathy,Kathy in Atlanta), Mar 06,2002,05:07 Top of Thread Archive
Several people have commented on the fact that when they are talking to me , my mouth moves as well. This also happens when I am trying to decipher what my mother is trying to say after her 2 ministrokes.



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