Re: what are the differences between meige and..?
Kathy - this is the most concise description I could find of the conditions you mention. It is copied from the site at the link below. Symptoms of oromandibular dystonia are very similar to TMD. In fact, it is probably possible to have both."Blepharospasm is a focal dystonia of the muscles around the eyes. Early symptoms may be uncontrollable blinking, especially in bright light. Sometimes spasms can become so frequent that the eyelids remain tight shut, making the patient unable to see even though the eyes and vision itself are normal. "Oromandibular Dystonia is a focal dystonia of the muscles of the jaw, tongue and mouth. The spasms may cause the mouth to pull open or shut tight. Speech and swallowing may be distorted. "Cranial Dystonia is a combination of blepharospasm and oromandibular dystonia. Other names used to describe the same combination are Meige’s syndrome and Breughel’s syndrome." Hope this helps.
Virginia in AL
Related link: http://www.dystonia.org.uk/aboutdystonia/aboutdystonia(a).html
Re: Two links for the price of one
You beat me, Virginia. At least we didn't both post the same links and actually gave a little different information. That's why it is good for several people to answer someone. You just get twice as much info. Two links for the price of one. Should we send our bills separately or just send her one? Maybe she would send us one of her paintings. Kathy is an excellent painter and has done some really lovely artwork. I don't think that we actually gave her enough information to warrant a piece of art, though. Oh well, I don't guess that we are in this for the money.Shirley in AR.
Re: Two links for the price of one
It would be nice to think that there's money to be made from having this disorder, but somehow I don't think so. Maybe I'll just let her owe me for a while. I'm sure I'll get paid back by someone sometime. That's what this BB is all about.Virginia in AL, who had her daughter come visit for the weekend. She's done her own laundry for years, but still likes Mom to cook for her.
Mom Food ...
Virginia:The healing powers of Mom food are not to be underestimated. It fills the tummy and spirit. We've carried it one step further in our family. My Daughter has the beloved large 'homade chicken and noodle' bowl that my Mother heaped with the delicious concoction for many years. It stuffed to the gills many children, grandchildren and great-grandchildren and is one of the first ventures in cooking for most of the above. Judy
Re: Two links for the price of one
i don't get it. do you think i have non-getting of jokesitis?
Re: Two links for the price of one
Hi Kathy,
You asked about the difference in meige and oromandibular dystonia and Virginia and I were both posting you a response at about the same time. Only minutes apart. We had both answered in a slightly different way and had both posted links that also were different. Virginia posted her post before I did mine and I was just teasing with her about how much we should "charge you" for this wonderful info that we had supplied you with. Of course there is no "charge" or money making involved with any of this. I just carried it a bit further by complimenting you on the beautiful artwork that you do and suggested that we "barter" for our "services" with you "paying" us with a painting. I was just playing around like I tend to do on occasion.
So, in summary, I was playing with Virginia and mouthing off and also giving you a compliment on your artwork. :-) That was it.
I think that maybe my humor was not clear enough. And now, it isn't even funny anymore. :-)Shirley in AR.where there is no charge for links or info or jokes
Re: what are the differences between meige and..?
I have read your letter with great interest. I thought Blehro. caused your mouth to twist as well as the eye problem, I feel that you must think I am stupid but I have never had anyone to talk it over with before ,so what is the distortion of the mouth called and is this why I have injections in my chin
It is great just to have someone to ask the questions that I usually forget to ask the consultant and I always feel that they will think I am complaining but I just want to know
Thanks
Joan Peterborough
Re: Meige and Oromandibular Dystonia
Hi Kathy,
Here is a link to a site that explains what Oromandibular Dystonia is. http://www.dystonia-foundation.org/defined/oro.asp Meige is defined in the "Blue Book" that the foundation puts out as: Meige is a form of dystonia. There is a difference of opinion among physicians on whether Meige is an extension of BEB or a separate syndrome.
Meige may involve muscle spasms around the eyes, lower face, mouth, tongue, throat, neck and sometimes the respiratory system, any one of which may affect the voice.. Shirley in AR.
Re: what are the differences between meige and..?
I was always under the impression that the combination of BEB and OMD was known as Meige Syndrome. That's how I was diagnosed by my neurologist. But since we separate the two on this board, I've gone along with it to avoid confusion.Christel in Ca. BEB/Meige
Re: what are the differences between meige and..?
That's pretty much the way I understood it, too. There has been confusion in regard to that in several questionnaires that we have been given which ask if you have BEB, Meige or HFS (check one). I usually mark Meige, thinking that that includes BEB. But you are right that on this board they are usually discussed as if one could have both - I've done it myself for the same reason you have. The MDS that I just saw calls what I have Cranial Dystonia, to include all facial movement. Who knows?Virginia in AL, cranial dystonia (now that should confuse the issue)
Re: what are the differences between meige and..?
I had HFS and had MVD surgery which took care of my trouble of swallowing but it didn't do anything to help with eye spasms and mouth movement. It was discovered I also had BEB. Lucky me. It seems to me there is a difference between Meige and HFS. The MVD was done by Dr. Jannetta, highly respected who had me come back a second time to see if it could be fixed and he said I no longer had HFS after doing a series of test. Tests were also done before the first surgery and there was the usual red thread or vein sitting on the 7th cranial nerve typical of HFS. Meige and Beb usually has something to do with the basal ganglia if I'm not mistaken. Still not a doctor or even a vet. Ann Doyle
Re: what are the differences between meige and..?
There is an article on the Natl. Lib. of Medicine that shows there IS a relationship between Bruxism and Cranial-cervical dystonia (and BEB). If bruxism is part of having TMJ and this could all be related then maybe these mouth pieces that dentists give to patients with to hlep TMJ/bruxism could possibly help certain kinds of dystonia or BEB. Therefore I am being fitted for a mouth piece this Wed. by my dentist who is recommening it for my TMJ/bruxism. I'm thinking in the back of my mind that maybe, just maybe, this could help my BEB. Since BEB is a neurological condition and these mouthpieces have helped with other neurological conditions (such as migraines ,etc.) I figured I better give it a try. If I find it helps, I will certainly let you all know.Trying ANYTHING,
Shanasy
Re: Dental mouthpieces and Magnesium
Shanasy, it certainly won't hurt to try one of the mouthpieces.How are the "magnesium trials" coming along? Can you tell any difference in anything yet or is it way too soon to tell? How long have you been taking the extra magnesium supplements, now? Shirley
Re: Magnesium
Thanks Shirley for your interest. Unfortunately, I don't think the mag. is working or doing anything yet. I started taking it Sept. 11 (an easy day to remember) so it's been over a month. I should give it several months trial. Of course then if it doesn't work, then I will be left wondering
1. Did I take enough or did I need even higher doses?
2. Maybe I need the injections which are for people who can't absorb the oral mag.?
3, Maybe I am missing some other element that in my body that is necessary for keeping the mag. from being absorbed.
4. Maybe I didn't take it long enough. Sometimes these things can take 6 months to a year to replenish the system.
5. Maybe in my "imperfect" diet I am consuming something that constantly keeps the mag. from being absorbed.Ahhhh geeeezzzz...it's all such guesswork!!!!! Soo frustrating!
Re: Magnesium (Manganese)Shanasy
Shanasy,You don`t know me .Go to Amazing Grace Post and you can see who I am.I have followed your trial with interest. I came across a book on my shelf( I`m aways buying books here and there). anyway the name is "Brain Allergies The Psychonutrient Connection" by William H.Philpott,M.D. and Dwight K.Kalita,Ph.D. On Chapter 11 The Perils of Toximolecular Medicine:Drug-Induced Illnesses,talks of tardive dyskinesia.He uses Manganese Chelate,B-3,B-6 and others.since you have been reading up on things you might understand it better then me.I wish I could scan the chapter to you but I don`t know how to use my scanner LOL LOL.Anyway I did a search on the internet and I found the book in amazone .com.He had lots of books almost the same but look for the name exactly like I said.If anyone is interested see if you can find the book. Thanks, Lile Tx.
Attn: Lile
Thanks for the tip Lile! I have made a note of that book and next time I am at a bookstore I will look it up. It sounds interesting and I LOVE to read...when I CAN read. lol! Thanks again!Shanasy
Re: Magnesium (Manganese)Shanasy
Hello Lilie. Very interesting, I don't know how to use my scanner either. Of course if I would sit down and read my manual pehaps I could figure it out. But first I have to get my printer working again, I do have that manual out and will follow the directions and hope.What I really need is one of you computer experts to come down here and get me straightened out.I have a good friend comeing back to the park in a few days and if I still need help she will come over.Talk to you all later. Edith in Fl.
Mouthpieces
I'm going to have a mouthpiece made, too. Something (whatever it is called) is causing my teeth to clench and I don't want any more cracked fillings or teeth. I did ask the MDS about it and he recommended it. Dr. Daroff (at the conference) also said it was a good idea - not necessarily to help the condition, but at least to preserve teeth.Virginia in AL
Re: Mouthpieces
I have had several mouthpieces made, bit through most of them, and they have saved my teeth. I'm sure I would look like a real red neck by now if I hadn't had the "bite guard" made. Mine is made of hard acrylic and fits over my bottom teeth. Dee in OR (generalized dystonia, Meige, blephs, oromandibular dystonia, bunions, wild puppies, messy house...)and friends on this BB who love me anyway (I hope)
Re: Mouthpieces
My mouthpiece sounds like the one Dee described.
My 2nd one was made a little thicker by my back teeth.
It really was a tremendous help for me, for my teeth
as well as jaw pain and headaches that come from
clenching and constant jaw snapping open and shut.
Mindy in NY
Re: Mouthpieces
My mouthpiece is also thicker by my back teeth. If I bite on my front teeth that is when I get the serious pain and headaches. As long as I clench on my back teeth at night that keeps the pressure off of the joint and really helps alleviate alot of the pain.
Re: Mouthpieces
My dentist told me that those mouthpieces are very expensive and even if you have insurance, they are not covered. He also said that they have to be frequently replaced as the teeth continually shift and the mouthpiece is no longer the right shape.Sometime ago, someone on this BB suggested going to a sports store and getting a football player's mouthpiece for less than $5 and trying that, but I've never gotten around to it. I keep waking myself up at night trying to remind myself to not grind my teeth! Sally in North Idaho with BEB/Meige and sore back teeth from grinding
Re: Mouthpieces
Sally,You dentist is partially correct - my insurance wouldn't pay for any of my night guards. They cost about $380 and the only time I replace it is when I have bitten through it! My teeth haven't shifted and my mouthpiec is still the same shape. I've had this one now for about 8 months and it is still good. I don't think the football player's one will work - I had a soft one and bit through it in 5 minutes! It has definitely been worth the money and when this one wears out, I will get another one. Dee in OR who is very concerned about you
Re: what are the differences between meige and..?
If you were talking about me and the jokesitis I was being very serious except for the last line of Dr. or VeT. I hope I didn't hurt your feelings. I encluded my e- mail so you could tell me off or ask questions or both. Ann D.
Re: what are the differences between meige and..?
I have beb/meige and tmj. I was diagnosed with the tmj first and fitted for a mouthguard that I wear at night 5 1/2 years ago. Shortly after, the spasms in my eyelids got so bad my tmj doc sent me to a neuro and I was diagnosed with beb. Because tmj is usually a temporary situation caused by stress and mine is permanent I do believe that there is a correlation. I clench my jaw all the time. My neck muscles became so tight I felt like I was choking and that is when I was also diagnosed with oromandular dystonia as well. I see an opth surgeon for botox in my eyelids and surrounding muscles, a neuro for botox in my jaw for the oromandular/meige, a tmj specialist for adjustment to my mouthguard, and a muscular therapist to ease the spasms in my neck and jaw caused by all the other spasms. She just recently began to work my jaw muscles and she can feel tiny spasms in them. I have tried to see fewer docs and to treat symptoms differently but it takes it all for me to function with as little pain as possible. I hope this helps.Kelly in Dallas
Re: what are the differences between meige and..?
I guess I need to put my 2 cents worth in. This is what I understand BEB/Meige is and I could be wrong because I am no expert. I have BEB which is spasms ( or whatever you want to call what ever closes the eyes)of the top eyelids. I did not have the Meige until after my first surgery (myectomy) and in the weeks afterwards I noticed that I had spasms under the eyes and also my nose would crunch up (like I smelled something) and my top lip would pull up. I began to grit my teeth at night or "clench" them shut. I asked the doctor about it and he said that it was Meige. After my second myectomy the spasms under the eyes became so severe that they shut the eyes. I felt like I had jumped from the frying pan into the fire. I also noticed that my nose was much worse and especially my mouth. I would sit and cover my mouth when this happen so others would not notice it. I also found that I began to make noises in my throat like a groan or I was in pain. It happened during the spasms. Just my thinking but I think that the groan come from the force of the spasms pulling my face upwards and I think the throat was the begining point of these upward spasms and it feels like my throat is in a strain. Does that make sense? Joyce in NC who is feeling much better about my eyes now. The 2nd set of Botox (52 units) has given me 75% relief for the under eye spasms, not perfect but better than before and also he gave me some shots lower down on my check area and more up and down the nose and that has really helped the nose and mouth.
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