Meige Syndrome Support Group

I thought I should share with you all my experiences at the Royal Adelaide Hospital where I was subject to a group diagnosis from several neurologists. For those who don't know, I have had trouble with my speech for the past 8 years, attempts to speak or move my mouth too much results in stiffening of my face/neck/chest & diaghram. (It was a very gradual worsening over the years too, not a sudden onset).

To start with, I had to take my shirt, shoes & socks off to allow them to see movements there. It was a little daunting having a group of doctors gawk at you and ask funny questions, but I think I did OK. They are experts at making you feel comfortable. One question was whether I feel a spasm coming on, or feel that spasming provides relief. No was my answer, the spasms just come out of the blue whenever I try to talk, and provides no feeling of relief during or after. I was asked to move various parts of my body, hand write, move my hands in various ways, walk across the room backwards, on my heels, etc. I was also asked to shut my eyes tight and all seemed normal there too, I was of course wondering why it is neurologists do this, but all was to be revealed. I was next asked to poke my tongue out and keep it still. It got a severe reaction: my chin tucked in, hands stiffened, eyes forced shut. It took about a minute to be able to open my eyes again. Tongue movements from side to side on the other hand, did not yield any great reaction (weird).

If I just sit normally, you can't tell there's anything wrong, but attempting to speak promotes eye lid spasms, shoulder movements, front & side neck muscles tightening, & corners of my mouth pulled right back. I recover pretty much straight away if I stop trying to talk, and spasms worsen with long sentences.

I was of course relieved to get a diagnosis, doctors previously saying I had a 'habit'. I was diagnosed with a segmental dystonia, obviously similar to Meige syndrome, but I'm not sure about the specifics of Meige anymore. What sold them was the stiffened hands, and the fact it is triggered by a specific movement. The movement in my throat/neck when I attempt to speak starts the dystonia going, and it proceeds to spread out from there to my face and chest/shoulders in a process called 'overflow'.

I hope this helps provide some sort of understanding of dystonia, it has helped me understand it a bit more. the doctor explained that there is as yet no clear understanding of how it is caused, or whether genetics has anything to do with it.

Hi everyone, my name is Tricia.

I am so excited to have found this support group for those of us who have been diagnosed with Meige Syndrome. I was a healthy 56 year old loving life more than I ever had before. then that took a change on June 8th when I became very ill at my godsons graduation. I wont go thru the whole long story right now, but I will say that I went from having a bit of an upset stomach, (I thought I was just hungry) & I felt a lttile light headed, then with in about 45 minutes of time I began to sort of hallucinate, I was talking to my precious Daddy & Mother who have long been in heaven, then I told a friend of mine (which I still do not remember) to tell my daughter I was dying & that I loved her. Seven days later after spending that time on the neuro ward of Salems hospital, the Drs said "you are a mystery, we dont know whats wrong with you but here take this clonazepam for the severe jerking I was having & sent me home with my sister.

Jumping to yesterday, I finally got the diagnosis of the head jerking, trunk twisting, face & mouth distortions, excessive talking, excessive sweating....shall I go on? Well Dr. Zielinski in Lake Oswego, Oregon informed my sister & I that I have Meige Syndrome......what? I worked as a medical assistant for 15 plus yrs, why havent I ever heard of this Meige thing?

do these little symbols make you think of how you look sometimes? They do me. LOL

Ok, I better stop before I write this beautiful day away.

One last thing, Dr Zielinski is a neurological chiropractor & he is one of the most amzing, & intelligent medical person I have ever had the pleasure of meeting, the other is my personal chiropractor who found Dr. Zielinski for me.

I hope you all enjoy your week end, & I welcome any comments anytime.

Blessings & Hugs,

Tricia[b]

Post edited by: rockinblues, at: 07/07/2012 01:21 PM

yes, funny jaw movements are the norm for me too. After a few years of this condition, I seem to have stabilised. Is your condition worsening, or remaining stable?

Hi Everyone - I have had Cervical Dystonia for many years, but it has morphed into Meige's over the past year or so. What a completely frustrating disorder! I have strong blepharospasm and I don't drive much because I'm afraid I'll be unable to open my eye(s) at some point. I also have neck contortions and mouth pulling to the left when I'm in full spasm. I continue to work at my job and luckily I have enough flexibility, privacy to "hide" my symptoms. I take 3 Clonazepam a day and while it exhausts me, it's enough to hide my symptoms. I recently had botox on both eyes and it not only did not appear to work, but left both eyes almost swollen shut. I'm hoping to find support from people who understand this condition. How is everyone dealing with it?

-Alyson