Posted by: Lynn Yarbrough ®
07/04/2003, 12:59:50
Author Profile Mail author
|
I'm sorry nobody replied to your inquiry. Let me tell you my understanding of the issues. I have a nephew and a couple of close frinds with epilepsy (E.), and to me it doesn't make sense that E. and BEB are related except in the sense that they are neurological problems. Epilepsy is a whole-body disease; BEB is very specific to the 7th cranial nerve. Those folks I have heard of who were prescribed dilantin (commonly used to treat E.) for BEB had serious negative results and NO positive results for their BEB. IMHO your neurologist is jealous of those who can make sense of computers. I use my computer constantly: it's my profession. If anything its use helps my BEB, not causes it. You are right in giving serious consideration to genetics as a possible source for BEB, but you are currently better advised to stick with whatever treatment currently works for you, and dilantin is NOT the treatment of choice. There is current research into genetic origins for BEB which is supported by BEBRF, but nothing conclusive as yet. ---- Lynn
|
Posted by: john from illinois ®
07/04/2003, 17:54:35
Author Profile Mail author
|
Thanks for the info and a little piece of mind. I really don't think that my computer usage isn't the problem, but I'm willing to explore all possibilties. When I go back to see him in September and my eyes are still the same, I wonder what he'll tell me to do next. Anyway thanks for the info again.
|
Posted by: Sally - in - Idaho ®
07/04/2003, 15:32:04
Author Profile Mail author
|
Hi John,I know for certain that computers had nothing to do with my onset of BEB, because I didn't use them until after the diagnosis. Actually, my eyes work better when I'm using the computer than other times. Also, they certainly didn't contribute to my mother getting it because she has never used a computer. I have volunteered for any genetic study that has come along, but have heard no response from any as of this time. Keep searching for answers, though. There has to be a breakthrough one of these days. Sally in North Idaho
|
Posted by: john from illinois ®
07/04/2003, 18:10:22
Author Profile Mail author
|
Thanks for your info. If they need any more volunteers let me know. I'll do what ever is necessary. I really think he's off base but I'll try anything to get this straightend out. I think I'll mention it to my Neuro Opthamalogist. Who by the way was the one that told me I had BEB after our first meeting. My faith in my Neurologist is waning. Thanks again . Thanks for your info.
|
Posted by: Ann Doyle ®
07/05/2003, 08:37:18
Author Profile Mail author
|
It is very hard to distinquish between Hemifacial Spasm and Blepharospasm. The only sure test is one where they put electrodes on your face and see the results.
When your dr. said 7th cranial nerve, it made me wonder because Hemifacial spasm is caused by the 7th cradnial nerve sitting on some nerve endings that send messages to your eye. There is an operation that cures 95% of the people. It is brain surgery and the best in the world are located in Pittsburgh.
Just as Dr. Anderson has built up a reputation for Bleph. DRS. Jannetta and Kassam at two different hospital in Pittsburg have develope an excellent reputation.
I can never remember the name of the electrodes on your face EKG? ECK?
I would certainly insist on having it done. What makes him think you have bleph and not Hemi? It won't show up on an MRI. They just do that to rule out tumors.
Look up Hemifacial spssm on the computer. I do know of a bulletin board site--hfs-assn.com Another place to get started is the site
We Move. Start there and print out things to take to your DR. Most know so little about it. I live in Ky but go to Nashville TN to a specialist. Not one DR in a 100 mile radius had ever heard of either one of them. There is just too much knowledge out there that one person, your DR. couldn;t know about all diseases. My general practioner here in town is very intereste in my case and want to know all he can about it and help me in any way he can. He's a listener and a real gem. I consider myself fortunate to have him. Since then I sent another patient to him who also goes to Vanderbilt in Nashville but uses him as her GP.
Please do a lot of work to find information on the computer so you will know what you need to know so you can make an accurate judgement on your DR. You need knowledge. Ann Doyle.
|
Posted by: john from illinois ®
07/05/2003, 10:27:24
Author Profile Mail author
|
Ann, you speak with straight tongue. I can't thank you enough. The things you say are just common sense. I fear the doctors are so involved and the knowledge they do have can confuse the issue and blocks the simple answers. Thanks again for being the steering wheel down the road of Bleph. (I like that metaphor, I wonder if I should put on my "Redwings")
|
Posted by: Ann Doyle ®
07/06/2003, 11:27:17
Author Profile Mail author
|
I was unable to altar the last reply. I think it is an EMG for Elecric Magetic G? Also had the Micro Vascular Decompression (MVD) for hemi-facial spasm. The 7th cranial nerve is sitting on a vein and they put a piece of teflon between the two. It too starts at the basil ganglia. We sure do learn the DR. terms, Spell check doesn't help becaus it has never heard of it.
Excellant metaphor. I like hikue the Japanese two liners. I had my fourth grade class write them and they were terrific. They are so uninhibited. As you can tell by now, spelling was not my best subject, handwriting, my very worst. When I told one class on the first day of 4th grade that I would be teaching handwritin, a boy i had in third grade laughed so hard he fell out of his sit onto the floor. True story. Ann Doyle
|
Posted by: john from illinois ®
07/06/2003, 13:31:45
Author Profile Mail author
|
Ok get ready for this:
According to the Steen-Hall Eye Institute Hemifacial Spasms or Meige’s Syndrome are characterized by chronic twitching or spasms of one side of the face. It affects muscles activated by the facial nerve. Hemifacial spasm can result from stimulation by a blood vessel lying too close to the nerve or may follow Bell’s Palsy (an inflammation of the facial nerve resulting in temporary facial weakness) due to incorrect regeneration of the facial nerve. There are 3 accepted treatments for Hemifacial spasms. Neurological, surgical, and Botulinum toxin injections.
On the Mayo Clinic website a question was asked about electromyography (there’s a mouthful) or EMG. It’s a test that measures tiny electrical discharges produced in muscle. (To me this would tell whether or not the signal is getting to the muscle from the nerve). Another version of the test is a nerve conduction study, measures the speed at which nerves carry electrical signals (this sounds like a good one too). The question of Peripheral Neuropathy is also brought into focus. One of the possible causes mentioned are Poisoning, such as from overexposure to certain toxic chemicals (arsenic, mercury or lead, for example). I have always had bad teeth. When I was very young I had a high fever when my molars were forming, as a result I would get cavities like crazy. Mercury was commonly used till they realized it was toxic. Working for the phone company in the manholes I was exposed to lead for years. Sure when they found that lead was toxic and was the cause of many ailments they tried removing as much and as soon as possible. Working in Chicago (the hub of Communications in the country) there was a whole lot of lead in the ground. The symptoms of Peripheral Neuropathy include:
1 Numbness, especially in the extremities (legs, feet, arms and hands)
2 Muscle weakness
3 Tingling, burning, prickling or tickling sensations
4 Pain, especially in the extremities (legs, feet, arms and hands)
Having 3 out of 4 of these little gems make me wonder just what is going on.
The reason I’m relating all this is that others can go further seeing exactly what kind of symptoms they have and talk to their doctors about it. I found this stuff out in less than one day looking under the Mayo Clinic, The Medem Medical Library, and the Steen-Hall Eye Institute. I’m willing that there’s a lot more we can find that our doctors just couldn’t have enough time in the day to look for.
So finally all I can say is Thank you Ann, One might say you’ve created a monster, but I felt better knowing a little more about what is or could be going on with me. If all this can shorten the amount of time, by only one day that I (or anybody else) am affected by this it will be all worth every second I spent looking stuff up. Thanks again.
|
Posted by: Ann Doyle ®
07/07/2003, 20:33:42
Author Profile Mail author
|
WOW John, What a mouthful. I can hardly wait to look up those sites but not tonight. I'm too sleepy and can't think. But I will go around with a swelled head after all that praise. It's OK if you call me Queen.
I had an EMG and MVD surgery--micro vascular decompression surgery for hemifacial spasms by the Dr in Pitt. that developed the procedure and has done over 5,000 of them. He has written a book on it called Working in a small space. Usually the 7th Cranial vein is sitting on a nerve and they put a piece of Teflon between the two. It is brain surgery near the Basal Ganglia. Two months after my surgery , he went to Austria to accept the neurosureons award of the year. Unfortunately I was his only failure. I was spasm free for 2 days. Went back two months later and had an EMG and he said another surger wouldn't help, that I should see a Movement Disorder Clinic. Mine is three and one half hours from home. but worth the shots . I was diagnosed with Blepharospasm with Meige Syndrome. My husband has antiphospforescent syndrome and my friend SJgorners diseas and that is spelled right.. It took me a long time to be abel to say antiphospforescent syndrome real fast. I always go to the DR. with my hustband. Once I speak up and call it by name , they take me seriously and none of that patting on the head to the sweet little wife. I am a knowledgeable person to be dealt with and they better listen and answer . Use medical terms whenever you can and never childlike terms. You urinate , not pee pee. Your as much of a man as he is and he is not God. Ann Doyle who learned a long time ago that DRs are just people and often wrong.
|
Posted by: Joyce in NC ®
07/08/2003, 09:12:27
Author Profile Mail author
|
ANN, Amen to that, Since you are giving out such good advice -here is some. Doctors like to think they know it all and we know nothing. One thing I have learned, never sign anything with out reading it first. Don't trust the doctor when they say to sign something and you say "what am I signing?" and they say "basically, what they just said". even when your eyes are squeezed shut and can't get them open - get someone to read it first for you. Sound so simple to think that we can "trust" those wonderful doctors but you can't.Joyce in NC - venting a little
|
Posted by: Ann Doyle ®
07/08/2003, 14:08:57
Author Profile Mail author
|
WELL, HERE COMES GOD THINKING HE IS A DR AGAIN JUST BECAUSE SOMEONE GAVE HIM A STETHASCOPE TO WEAR. Ann Doyle
Thanks for the good advice Joyce.
|
Posted by: Nancy in B.C. ®
07/08/2003, 21:44:44
Author Profile Mail author
|
So, Ann, could you tell me what antiphosforescent syndrome and Sjgorners disease are? Are they neuro type disorders also? Nancy who is just curious.
|
Posted by: Ann Doyle ®
07/09/2003, 13:21:19
Author Profile Mail author
|
No , the first one is a blood disorder and the second one you would have to look up on the internet. I found a bunch of stuff on it for my friend and gave it to her and forgot about it. Since it has nothing to do with Dystonia , you don't have to know about it and I just have to know how to say Antiphosforescent Syndrome real fast once or twice to prove to the idiot and get the DRS. attention. I have noticed , after that they start talking to me and not to him as if he were a child. I was just trying to show you that you have to learn DR. Talk such as. I have Benign Eseential Blepharospasm with Meige syndrome. In non DR talk---Benign means it won't kill you, Essetial means we don't know what causes it. Bleph aro the eyes. Spasm , close and open or jerk. If they pronounce Meige differntly and they correct me , I correct them with a third way to pronounce it and say You know it was named after Dr. Meige who gave it the name and no one really knows the right pronunciation.
I'm mad at the world today. Esoecually my husband. Ann What is worse than worms?
Sorry everyone, I meant this to be a personal email. I am way off kilter today. Found out more bad news. My husband of 53 years doesn't want to go to Salt Lake City with me for the operation because he wouldd have to leave his dogs. Guess where my self esteem went. Ann
Modified by Ann Doyle at Wed, Jul 09, 2003, 13:32:19
|
Posted by: Anna Fuzie ®
07/12/2003, 14:08:28
Author Profile Mail author
|
Hello Ann,
I had the recent experience regarding the pronounciation of Meige with my newest assigned HMO doctor whom I have very little confidence in...because there is now a doctor in the HMO group who gives Botox for the BEB I can no longer go to the doctor I have had for over a year and who I have the utmost confidence in. This new doctor looked at me like I was nuts when I explained Meige to him... he didn't seem to know what it was and my heart sank. I am an RN and it is amazing to me doctors who think they can get away with treating the public the way they do. I rarely tell a doctor that I am an RN until they get a little nervous when I start talking and asking a lot of questions about treatment etc...they usually get a little nervous and ask if I have some kind of background(like I wouldn't know about my disease process even if I weren't a nurse)... There was just a study on how a good majority of doctors do not tell patients all of their options. I am a nurse manager in a busy department and sad to say there are even nurses that work for me that I would not want to be my nurse and I have told them that. You are exactly the kind of patient we all need to be, Ann...informed and not afraid to tell the doctor and the nurse so! You go!
Anna in the high desert of California... botox free since February and entirely medication free since October 2002. Symptom free as well and counting each day as a blessing and hoping the same for all.
|
Posted by: john from illinois ®
07/13/2003, 19:05:12
Author Profile Mail author
|
Well congradulations, what did you do to get botox free and symptom free. I am very interested to know.
|
Posted by: Anna Fuzie ®
07/17/2003, 09:10:53
Author Profile Mail author
|
John,
I assume your question of what did I do to become symptom free or medication free is for me...
I can't tell you one thing that I did. I know that I was the biggest whiner, had little hope and was absolutely terrified. I spent 45 days at least off work last year thinking I would never work as an RN again. I know that I had a network of people around me who absolutely supported me and many who prayed... while I'm not a religious person I did have an experience of two people in particular who had called me almost on the same day to pray for me and one of them who is Catholic had sent in a prayer card for candle lighting.
The condition came on after I had an infection with contacts as a first time wearer...the doctor did suggest that this could have triggered the nerves but when reviewing I know that I had some eye squinting prior to the actual onset. I had BEB, apraxia and an extreme case of Meige or Ormandibular Dystonia and terrible photophobia to almost all lights. At one point I was taking benadryl 50 mg several times a day on top of ativn 1 mg 3 times day plus artane 5 mg 2 times a day and at night valium 10mg. How I was ever able to stand I have no idea because aspirin makes me sleepy. I did try neurontin and also depakote but none of that seemed to help me at all.
I was taking botox 90-100 every two months and was still symptomatic with BEB and OMD. This all started the end of May for me last year.
Around October I had my third round of botox and I noticed that I seemed to be doing better and I slowy tapered off all of my medications. By December I was medication free and even though I didn't really have any symptoms I had a round of botox in February of 2003. I only had if I recall 35u but it seemed way too much as I could hardly keep my eyes closed and it was an uncomfortable feeling. I haven't had botox since or any medications like I said since December and I do not have any symptoms of BEB other than an occasional rapid eye blinking that occurs mostly when I'm tired...every couple of days or so. I do have an occasional reaction to the sun as well...depending on how bright it is out...but I can just wear any dark sunglass and am OK.
I don't know anyone thing that helped. Most close to me insist that I was under a lot of stress last year and that this is what brought it on. I still have the same stressors so I really don't know. I have worked on how I respond to the stress and I try not to let it eat me up as much. Everyone on here has wonderful information and I know reading this when I was so symptomatic was very helpful and supportive.
So the answer to what I did...I don't know. I can't discount the prayer and faith all of the others had either.
I wish you the best.
|
Posted by: Ann Doyle ®
07/20/2003, 09:41:49
Author Profile Mail author
|
I believe in the power of prayer. I am on a lot of prayer lists but mine keeps getting worse. I believe the prayer helps me to cope. Some people are blessed to go into remission. Gods will be done. Ann Doyle
|
Posted by: Ann Doyle ®
07/15/2003, 08:20:05
Author Profile Mail author
|
I also take computer printout from reputable sources like a hospital or DR. so you can show them. and get some respect instead of the pat on the head meanig you poor senile old lady.
I go to my Dr. in Nashville and want a myectomy in Utah. There are several DRS. in Nashville who do a very limited myectomy in comparrsion of DR. Anderson which would be fine for a lot of patients. I have the printout of DR. Andersonns procedure describing in detail what else he does and why. I also have people who have recommended him and some who have had two myectomies before going to Anderson and getting what they needed.
One page is flattering to my DR. in Nashville because he spoke at a conference there and they thought he was great. I'll let him read that first. Ann Doyle
|
Posted by: Virginia ®
07/09/2003, 17:50:44
Author Profile Mail author
|
Actually many of us have symptoms in common with Sjoggies. Dry eyes, mouth, and dry "anything else which isn't supposed to be dry" are symptoms. There can be other symptoms that we don't share, but I've learned some things about dry eye by looking into Sjogren's Syndrome (it's an autoimmume disease).Virginia in AL
|
Posted by: john from illinois ®
07/09/2003, 18:28:06
Author Profile Mail author
|
I can understand that. There is so many medications that one of the side effects are "dry mouth". Plus I'm taking a water pill for my blood pressure. I was taking medications that one of the side effects were problems with sunlight. So in a time when I can't keep my eyes open in the first place, I'm given something to make me want to shut my eyes in the bright sunlight when there's snow on the ground. Go figure. Sometimes I understand why they call it "practice medicine". Hoping they'll get it right I guess.
|
Posted by: Ann Doyle ®
07/10/2003, 18:41:08
Author Profile Mail author
|
I know wigh my friend who has had it for many years takes a handfull of pill s when she first wake up and then goed back to bed for two hours and then gets up. She does volunteer work with me at the hospital for 4 hours once a week. She doewn't want to talk abou it . I looked up a bunch of stuff on the internet and printed it out for her but she wasn't interested. Ann Doyle
|
Posted by: Ann Doyle ®
07/12/2003, 21:51:22
Author Profile Mail author
|
Just caught on to your "practice Medicine" Very Cleaver. Brain is as slow as my computer today. Good chuckle Ann Doyle
|
Posted by: Ann Doyle ®
07/11/2003, 09:40:15
Author Profile Mail author
|
Thanks for teaching me how to properly spell Sjogren's Syndrome now can you tell be how to pronounce it. When my friend says it, she says So Jour Nells. But she speaks very southern and I am northern. Any help there? I knew how to spell it when I was looking it up for her but guess I forget. Can you imagine forgetting something.? Ann
|
Posted by: Virginia ®
07/11/2003, 09:48:23
Author Profile Mail author
|
Pronounce it "show-grins" with the accent on "show". Actually just pretend the j is an h and it's pretty easy to pronounce.I remember my mother telling me years back that she once had the memory of an elephant and now she just had the figure of one. I'm not quite there yet, but I can relate. Virginia in AL
|
Posted by: Nancy in B.C. ®
07/11/2003, 22:20:20
Author Profile Mail author
|
So now I know how to say showgrins syndrome, what is the proper way to say Meige syndrome? Nancy in BC who's computer monitor seems to have contracted BEB as it starts to blink and then spasms and I have to shut the monitor off to let it rest in order to continue.
|
Posted by: Ann Doyle ®
07/12/2003, 09:28:34
Author Profile Mail author
|
There are three acceptable ways to pronounce Meige. It is named after the DR. That gave it a name. No matter how you pronounce it, the other person will pronounce it a different way. I wish I knew what country DR. or MR. Meige is from.
I had the same problem with Saucony Running shoes.. So-Co-knee, or Sox-on \knee. Fineally I talked to the head office and they said neither it is S0cks- on--knee.
If they correct you, just ask if you know him personally. As you can see I am already fighting. Ten more days to go till Botox. Ann Doyle
|
Posted by: Virginia ®
07/12/2003, 17:22:59
Author Profile Mail author
|
You just call it Cranial Dystonia and anybody can pronounce that.
|
Posted by: Ann Doyle ®
07/12/2003, 21:44:50
Author Profile Mail author
|
Just found out we don't have to know how to pronounce Meige. In the new Bleph magazine on page 1o they write oromanidubular dystonia (Meige) . The first is the syndrome and the second is the man who discover it. Yeah for our sids. Ann Doyle. More of a mouthful though?
|
Posted by: Delaine Inman in TN ®
07/05/2003, 09:25:35
Author Profile Mail author
|
Very interesting thoughts and good questions. I didn't spend a lot of time on computer and before computers there was BEB. I'm a nurse and when we have a predisposition to something like BEB, there are one or many things that probably finally trigger it to start the symptoms. Botox didn't help me at all until I had surgery and then it helped only slightly. Then I FINALLY got someone to agree to let me try Klonopin (after begging many many many many doctors). Klonopin is an antiseizure drug. It works on the GABA A & B chemicals of the brain. Many of the drugs that do work for BEB work on either or both GABA A & B, A or B chemicals from the brain. The Piracetam which helped relieve my symptoms for longer periods and I can tolerate in larger doses also works this way. (It is not FDA approved but 2 neurologist verified why it works and were familar with it and it's safety.) Dry eyes is a biggie and sitting at computer we often don't blink as often to lubricate our eyes. I had worn contacts for years and was already light sensitive since childhood and I knew my eyes were dry before I got BEB. I was also taking Elavil at night in a very low dose, but it made the dry eyes worse. I have Fibromyalgia and was taking it to sleep and decrease pain receptors perception of pain. It affects connective tissue and muscles and I think is related to BEB because it is a brain disorder too. I think stress or trauma both physical and emotional can be a factor. I asked one doctor why he didn't attend the BEBRF conventions and his answer was interesting. He believes in the support the BEBRF gives us in information and forums to meet others and get support individually and in groups, but he doesn't believe the people presenting research papers there have a lot of new information to offer and his time and money has to be spent carefully and he chooses to go to Neurological medical meetings. He reads published articles on dystonia of every kind, but he doesn't think the cure will come from something BEBRF research will do. He says it will be found by someone doing research on something else and somehow they will accidently find that it works for BEB and other dystonias. No one is really going to reveal anything groundbreaking at our conventions. Research is much more secretive and political to be revealed until it is proven and can be credited to the individual or group who did the work and can claim it after it is thoroughy proven to work he said. That was an aha moment. Most of what I've learned that works are things we as patients have learned by trial and error and they don't work for everyone. The presentations over the past 4 years haven't revealed too much to me unless they were experiences of patients and doctors not experiments of research. The experiences shared and the meeting of people sharing those experiences make the conventions worth the trip. But I could understand where he was coming from. He gets the newsletters from the BEBRF and reads them. I use to get upset that none of the docs I knew went to the BEBRF, but his explaination helped me understand why many choose not to go. I do encourage them all to get the newsletter and read it and most do. Didn't mean to go on and on. I know that doesn't answer your question.....but it really can't be answered.
Modified by Delaine Inman in TN at Sat, Jul 05, 2003, 09:30:28
|
Posted by: john from illinois ®
07/05/2003, 10:40:42
Author Profile Mail author
|
Understanding something always helps. Just reading your response has helped. I thank you. I too was taking Elavil because I was being treated for Narcolepsy, which I don't have. I recently have stopped and things are getting back down to normal. I'm going to print your response and read it over a few times to get everything I can out of it . Thanks again for you info.
|
Posted by: Nancy in B.C. ®
07/06/2003, 22:52:58
Author Profile Mail author
|
I am finding this exchange of information so very interesting also. I think your doctor is probably way off base thinking that computer usage was the cause. I also started using a computer long after I had been diagnosed with BEB. so something else was the trigger. Mine developed shortly after I had an amalgam filling replaced with a dfferent type. I have long suspected that mercury vapors from that dental visit had something to do with it, knowing that mercury is a neuro-toxin. But of course none of the doctors (or dentists) I have mentioned this to are willing to comment on it. I have learned that childhood vaccinations have (or used to have) minute amounts of mercury in them. Who knows, maybe they accumulate in the body until it reaches a certain amount when it does damage that results in BEB or other dystonias. (or even fibromyalgia). As for genetic markers, I know of no-one in my family that has ever had any type of dystonia, so for my case I doubt it is hereditary. It WOULD be so nice to get some answers. Nancy
|
Posted by: Ann Doyle ®
07/07/2003, 20:37:58
Author Profile Mail author
|
I find the mercury comment very interesting because I have bad teeth , runs in the family and started getting fillings at age 6 with mercury. and lots of them. Of course I read it was a poison 20 years ago but never connected the two. I'll bet I have some in my teeth right now. That never crossed my mind. I never put the two together. Thanks , ANn
|
Posted by: luv2walk2 ®
09/09/2003, 18:30:39
Author Profile Mail author
|
I read that something called Parkisonians also has to do with suspected metal poisoning. Has anyone been daignosed with that or had their illness associated with Parkinsons or Parkinsonians?
Modified by luv2walk2 at Wed, Sep 24, 2003, 16:09:34
|
Posted by: Mares ®
07/16/2003, 20:02:11
Author Profile Mail author
|
As a electroneurodiagnostic technologist, I wanted to respond to the questions from a somewhat educated, but not physician level, point of view. First of all, I am just learning about blepharospasm from doing research for my sister, who possibly has this dysfunction, so I'm not an expert by any means. However, I can assure you, that epilepsy is a condition that is like an electrical "short circuiting" between the neurons in the brain, specifically in the cerebral cortex. There are certainly some types of seizures that can be caused by flashing lights, however, it is a small percentage of patients who have this photosensitivity. Since blepharospasm is a condition that isn't really related directly to the cortex, I would highly doubt that these two conditions could possibly be related. I would assume that it could be possible, however, if someone had brain cancer or some other disease that was effecting both the cortex, causing seizures, and the cranial nerves, causing blepharospasms. The EEG is the most common test used to diagnose epilepsy. If anyone is interested to know more about this, I'll be happy to elaborate; just ask me.The EMG (electromyograph)is another neurological test where a thin needle electrode is inserted into the muscle to test the nerve and muscle junction. Sounds like fun, huh? I've seen grown men cry when they've had to have this one done! Of course, we women who have gone through childbirth have such a higher pain tolerance, right? :)
(Just kidding to all you men out there!) The EMG is often done in conjunction with a nerve conduction test. This is a non-invasive test where electrodes are placed against the skin at the site of the nerve. An electrical impulse, like a small shock, is then given and the speed of the nerve impulse is measured. This is a really common test used to diagnose carpal tunnel syndrome and other neurological disorders of the peripheral nervous system (this is all the nerves outside of the brain and spinal cord). I hope that this information is useful. Does anyone know if there is a direct connection between Sjogren's and blepharospasm? I have two sisters that were both diagnosed with rheumatoid arthritis, and RA and Sjogren's (as well as lupus, scleroderma, etc.) fall under the umbrella of autoimmune diseases. Now a third sister is exhibiting symptoms of blepharospasm. Makes me wonder if there's a connection? Mary Anne
|
Posted by: Shirley-Arkansas-USA ®
07/16/2003, 22:08:53
Author Profile Mail author
|
Hi Mary Anne,
I've posted a couple of links that you might find interesting.
There are on-going studies involving Blepharospasm and the Basal Ganglia, cerebral cortex and short circuiting of neurons. I don't think that we can say that there is no direct relationship. Shirley in Arkansas http://www.blepharospasm.org/99morecr.html 
Related link: http://www.blepharospasm.org/99perlm.html
Modified by Shirley-Arkansas-USA at Wed, Jul 16, 2003, 22:10:13
|
Posted by: Mares ®
07/17/2003, 08:26:26
Author Profile Mail author
|
Shirley, thank you for the websites. There is a lot of very interesting information; I appreciate it!I agree that no one probably knows yet what the relationship is between blepharospasm and epilepsy. What I was trying to say was that when someone has a seizure, there is a definite, recordable change in the electrical activity of the brain; sort of like an arrythmia within the heart. The EEG activity becomes abnormal, and there are different abnormalities associated with specific types of seizures. When someone has a tightening of the muscles from the blepharospasm, there are not changes in the EEG activity, suggesting that the origin is not from abnormal electrical firing within the cerebral cortex. Thanks again for the links.
Mary Anne
|
Posted by: Ann Doyle ®
07/17/2003, 16:23:23
Author Profile Mail author
|
as far as I know there is no connection between the two Mary Ann . I had the EMG and it really isn't bad . The worst thing to set off my Bleph/ Meige is an arcad the flashing light are terribble. I use to like to take my gand children there. The
The brain tells the eyes to close . When my grand chil was killed they opened up and stayed open until after the funeral. Alan Phair explained it.
I plan on haveing a myectomy to cut the muscles on the forehead and around the eyes. the eyes stay ope and you have to keep using eye drops but I Prefer that to being blind which I am a great deal of the time. Ann Doyle
|
Posted by: Delaine Inman in TN ®
09/10/2003, 16:59:24
Author Profile Mail author
|
Many of the drugs that help like Klonopin are antiseizure drugs. You have a predisposition to BEB or everyone on the computer for long periods would have seizures and BEB. It's a trigger not a cause.
|
Posted by: Kathy in Atlanta ®
09/11/2003, 09:18:07
Author Profile Mail author
|
A lot of us have noticed our eyes much worse after too much computer time and those flashing lights and little pop up ads do also irritate them and i cannot look at a lot of them for too long. where did i read about japan syndrome that was noticed after kids playing too many computer games and having epileptic like fits afterwards?
|
|
