Since Nov. I have had a growing number of neurological symptoms: starting with a "lazy" eye, mouth twitching, and now leading into muscle weakness and spasms with pain, all on the left side of my face. I am having trouble with chewing, too. I have been to many doctors. I was taken off many drugs, such as antidepressants, anti-epileptics, and Lamictal. I even took myself off an anti-cholesterol drug. I have had an MRI of the brain, with no signs of problems. I was diagnosed with "wear and tear" of the spine--lower back, and especially some bad discs in the back of my neck. I just had nerve tests of my arms and was found to have carpal tunnel in each wrist. Next week I'm scheduled for leg-nerve testing. My dentist says I'm having "muscle spasms," not TMJ. My neurologist is puzzled. He did give me a muscle relaxer (Flexeril), but the pain in my cheek still comes and goes and I still have chewing problems. But my eye is better and my mouth only twitches after I smile a bit. The neurologist says he might give me another brain scan at some point, since I might have a "progressive" problem. I'm scared. What could it be? I've even been tested for MS, myasthenia gravis, etc. Anybody have any ideas? Meanwhile, I'm going back to my neurologist as soon as I can, since the flexerilisn't solving the problem. he says he has another drug he can try...Help!
My neurologist gave me 0.5 mg. Clonozapam 3x a day for the exact symptoms you are having, and I also have the back problems you have. It really helps. I couldn't live without it. When you see your neurologist, ask him about this. Hope you feel better, I know exactly what you are talking about, and it seems like it will never go away, but once I took one pill, it stopped, and has not come back in 3 years.
Thanks so much for responding. I was feeling upset that no one was able to offer any help. I am glad to hear that clonozapam did the trick. Alas, however, because I have bipolar disorder, that is a drug I take 2 times a day--and have been taking for years. I did just get a prescription for trileptal from my neurologist--and my psychiatrist approves of my taking it. You give me hope, anyway, that such drugs can take care of the problem! Best wishes, and thanks again.
My little sister who is 12 is told she has muscle spasms that cause the ache.
it all started in 2006 when she got a dark spot on her cheek (bruise) out of no where... and doctors couldnt diagnose her and then saw something abnormal on her bone through a scan... it was osteomyeltis...
but not that infection is gone but she is in excruciating pain, and this pain lasts about a month or two before it hides for a few weeks. currently she has been in pain since sept. 5th narcotics and muscle relaxers are not helping her... my parents and her have not been able to get sleep. we finally got an authorization to go to UCSF to that facial pain clinic, hoping that they might find out what it is... after much research it really does seem like a trigeminal nerve...
but she also has pain in her eye, jaw, cheek. has trouble using her jaw... and pretty much drinks tylonol like juice from a bottle and flexeril, codeine.....
i cant wait to find a doctor that will not give up on her. it's been 5 years already and after about 1/2 a year they give up.
It could be what they call Dystonia. I suffer from what's called Cervical Dystonia which is severe and uncontrollable muscle spasms of the neck. There is also a form of Dystonia which effects the face and other parts of your body. This might not what is wrong but it won't hurt to research the subject.
__________________
RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis
What's the reflex dystrophy thing, Rayefaye? I've noticed and other people have, too, that the painful side of my face has been sort of sunken in. But the Trileptal is helping, I think. Plus I've had two laser treatments so far for the trigeminal nerve on my left side of my face. The eye is acting up a bit (again) with some pain and blurriness.
(Note: enough rain now in our area--our roof is even leaking!)
Update: I'm just having a little trouble with my left eye now--just some pain now and then and occasional blurriness. My eye doctor says he see some signs of developing cataracts, some change in my vision which could mean a need for new lenses, and maybe I can get rid of the prism lens, since my eye is not crossing anymore. I see him next month for my yearly exam, so we're trying to wait for that, so insurance will pay.
My neurologist diagnosed me with atypical trigeminal neuralgia and put me on Trileptal. After a number of weeks and an increased dose of it, the facial pain is diminished--just every so often. Alas, though, I'm still having trouble with chewing--have to try to eat things that don't need much work and cut stuff up into small pieces.
I was out on mestonin for a bit to check out the possibility of myasthenia gravis. Didn't help--in fact, I seem to think it was during that time that I started having the trouble chewing and then the facial pain!
Payne,
How long did it take you to finally start figuring things out?
sounds like things are looking up for you?
i CAN'T wait til I can say that for my little sister, I am on here for her.
I've been having problems starting around November of last year. I don't think the doctors have totally decided my ultimate problem, though. My neurologist says he might have another brain MRI on me at some point, still suspecting I might have some sort of "progressive disease." I had one last December and nothing showed up. Yes, something does seem to be wrong with my left facial nerve, but I think my nervous system might have a more compicated problem. Yes, I am thankful that the Trilpetal has helped--do still have some pain sometimes, however. I sure hope your sister's problem can be fixed soon. It's particularly distressing that she is so young, whereas I'm a "middle-aged" lady. You are cetainly a sweet sister to be trying so hard to help! : )
Yeah, five years is really a long time.....Do you really think the doctors have sort of given up on her? Is there any way she could start over with another doctor?
Yeah, five years is really a long time.....Do you really think the doctors have sort of given up on her? Is there any way she could start over with another doctor?
they help out tremendously for about half a year... but then they hit a wall.... of not knowing what else to do.....
but speaking of starting over:
last week on wednesday we went to the orofacial pain clinic at UCSF my mom and dad gathered EVERYTHING all her imaging and all the charts from all her doctors... and i guess that's our starting over point... and this doctor said he is not planning on giving up because she cant really live with the intense pain.
Hi Payne, sorry it has taken so long to answer u back. Reflex Sympithetic Dystrophy (RSD) is a condition caused by severe damaged to the nerves. Mine was caused by my nerves being severed in both arms in a car almost 30 yrs ago. It is a very painful condition.
__________________
RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis
That certainly does sound painful, Rayefaye. I'm sorry that happened to you. My facial pain is better--but I just wish my nerve would get totally back to normal.....Maybe that's unrealistic, though. Take care!
Hi Payne, I'm glad to hear ur pain is better. In the begining the pain from RSD was extremely pain. In the past few yrs it's gotten much better so now I just have a bad here and there.
__________________
RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis
Since Nov. I have had a growing number of neurological symptoms: starting with a "lazy" eye, mouth twitching, and now leading into muscle weakness and spasms with pain, all on the left side of my face. I am having trouble with chewing, too. I have been to many doctors. I was taken off many drugs, such as antidepressants, anti-epileptics, and Lamictal. I even took myself off an anti-cholesterol drug. I have had an MRI of the brain, with no signs of problems. I was diagnosed with "wear and tear" of the spine--lower back, and especially some bad discs in the back of my neck. I just had nerve tests of my arms and was found to have carpal tunnel in each wrist. Next week I'm scheduled for leg-nerve testing. My dentist says I'm having "muscle spasms," not TMJ. My neurologist is puzzled. He did give me a muscle relaxer (Flexeril), but the pain in my cheek still comes and goes and I still have chewing problems. But my eye is better and my mouth only twitches after I smile a bit. The neurologist says he might give me another brain scan at some point, since I might have a "progressive" problem. I'm scared. What could it be? I've even been tested for MS, myasthenia gravis, etc. Anybody have any ideas? Meanwhile, I'm going back to my neurologist as soon as I can, since the flexerilisn't solving the problem. he says he has another drug he can try...Help!
Hi Payne,
I really do not mean to scare you and so I hope this information doesn't, but it sounds like you have exactly what I have and it's called Blepharospasm (pronounced "BLEFF-aruh-spasm") and Oromandibular Dystonia, and those are both types of Dystonia. The word blepharospasm refers to the eye and the word oromandibular refers to the mouth and jaw.
In November 2009, my left eyelid started to droop. This is referred to as ptosis (pronounced "TOE-sis"). I thought it might be Bell's Palsy, at first. Then, I finally saw a neurologist when I began to experience a little bit of weakness in my left arm. When I look back, my symptoms were quite subtle in the beginning.
I live in Houston and was misdiagnosed in February 2010 by a prestigious medical center doctor. The doctor said I had Myasthenia Gravis (MG), and was wrong. I was placed on all sorts of heavy treatments for MG for several months, which landed me in the ICU due to breathing problems on Mestinon, a main drug they give someone for MG. If you don't need Mestinon, and you take it, it can have some severe reactions like that (a cholergenic crisis). I'm surprised you didn't have any severe reactions, which could potentially be life-threatening. I underwent several other serious treatments that hopefully did not cause my body any long-term damage. All the while, I kept getting worse and this puzzled my doctor. I was on Mestinon for nine months . . . 60mg/every three hours and then an extended release tab at night while I slept. You say you think you may have worsened while on Mestinon. That's interesting because I really think taking Mestinon hit the fast-forward button, so-to-speak, regarding my case of Dystonia. There really is no way to find out if it did, but I was progressing at a much slower rate before I was on Mestinon and all the other junk that neurologist put me on.
My point is that it's sad a world-reknowned medical center doc couldn't pin down something as obvious as Dystonia, and all neurologists really should be familiar with the condition. It is a pretty common disorder that is often misdiagnosed and underdiagnosed.
Then, in October, the left side of my mouth started spasming violently and towards the left side of my neck. It was all involuntary It looked kind of like a seizure, but wasn't. I was conscious and able to keep my husband calm while he witnessed it.
So, in November 2010, I finally sought a second opinion from another neurologist and within the first visit he diagnosed me correctly with blepharospasm. I wasn't even spasming at the time he saw me. He just noted the eyelid and mouth droop, and knew right away what it was. He is a very smart doc. I was told that the only treatments for it were Valium and Botox. Sadly, those are the only treatments available for people with Dystonia, sedatives and Botox.
Dystonia is a hyperkinetic movement disorder. It has to do with neurons misfiring in the basal ganglia in the brain. There are so many types of Dystonia (I think over 30 and growing). It can be frustrating for both the patient and doctor to pin down exactly what type of Dystonia you have. The symptoms are often intermittent and progress slowly over time.
So far, my neurologist thinks I have hemi-dystonia ("hemi" means "half" -- referring to half the body), and my hemi-dystonia includes blepharospasm/oromandibular dystonia, because it really only affects the left side of my body, left arm and left leg included; however, the left side of my face is what is most noticeable.
There is a certain type of specialist within the neurology field that are still neurologists, but they specialize in movement disorders. I highly recommend that you find a neurologist that specifically treats patients with movement disorders.
My neurologist told me that hemi-dystonia usually does not progress to a debilitating state, at least that is what he thinks but he does not know for sure. I read that Dystonia can progress, it sometimes does not progress and stops at a certain degree, and then rarely it can go into remission. No one really knows if a person with Dystonia will progress and no two cases are completely the same. Really, no doctor would be able to predict the outcome of your case, if you, in fact have this as well. They just monitor you and try to manage it as best they can with some sedatives and Botox. In the most extreme cases, I've read that deep brain stimulation can be helpful, but that is reserved for people confined to wheelchairs and it's kind of their last hope.
If you have an adult-onset case of Dystonia, there is some reassurance that it usually does not progress to a debilitating state.
Currently, I have issues with the left side of my face clamping down, the left side of my mouth turns down and it looks like I'm grimacing, and I will get weakness and sometimes even experience some temporary, partial paralysis (called "paresis") in my left arm and leg. During a dystonic storm or dystonic attack (that is what they're technically referred to as), the left side of my mouth will pull violently into the left side of my neck and spasm involuntarily. Sometimes this involves an involuntary rocking motion of my torso. On occasion, I become dizzy during dystonic storms.
If you go to you*tube, and type in "dystonic storm," and click on the first video result, then you will see a video of a lady experiencing a dystonic storm. I look exactly like that during one of my dystonic storms, except she has dystonia on the right side of her body, and mine is on my left.
As of now, Valium does not relieve my symptoms at all. I inadvertently found out that Ambien helps relieve my symptoms. My neurologist claims that this is just because it's a sedative and that all sedatives can help Dystonia, but I'm not quite sure. Ambien stops my dystonic storms dead in their tracks, but the medication wears off in 2-3 hours. I have not yet tried Botox.
I have also been diagnosed with Horner Syndrome by a neuro-ophthalmologist. I was told to see him per this new neurologist's request. It's just kind of another thing I have to deal with. There is (surprise!) no treatment for that as well, and it just affects my pupil size . . . my pupils are different sizes, I'm really photosensitive, and it causes varying degrees of blurry vision for me (no prescription can help -- I have 20/20 vision, but it's just blurriness that comes and goes). I was told that it really has nothing to do with Dystonia, but the onset of the Horner Syndrome symptoms came on during the same time as the Dystonia symptoms did. I had an MRI done, and it came back clear for lesions and tumors, etc.
What I've learned about the field of neurology, is that there is so much that is still a mystery -- even to the finest doctors! They'll admit they just do not know. It's frustrating that they have found a way to nail down the diagnosis of all types of Dystonias, but there are really no effective treatment options.
Dystonia, for me, is so bizzare because I can look relatively normal or completely normal until about 2pm in the day. As the day wears on, my symptoms increase (the facial clamping and the gimpiness I experience on the left side of my body, which often leads to my leg limping). Emotional and physical stress can bring on dystonic storms as well as lack of sleep.
I have a toddler to keep up with, and I try to get all my activities in with her done before the afternoon when the symptoms really start to take effect. I have tried to cope with everything the best I can, and I am thankful I have such a wonderful, supportive husband.
I was really freaked out when I first learned I had Dystonia. When I learned it could be progressive, then it really, really freaked me out. However, I am the type of person that would rather know what I have and try to figure out as much as I can about it so I can get as much help as possible. I have accepted the fact that I have it now, and am no longer in shock.
The good news is that there is usually a limit to its progressiveness if it has an adult-onset, and especially if it's limited to one side of your body.
The best thing to do (especially if you experience dystonic storms) is to videotape them and show them to your doctor. They are so hard to describe and chances are they won't happen in front of a doctor -- they just occur on their own watch. It is a common practice to take video footage to a neurolgist/movement specialist. They find it helpful in diagnosing patients. Don't feel dumb doing that. I felt awkward doing it at first, but my neurologist encouraged it.
Please feel free to contact me anytime. I hope I have been some help to you. Take a deep breath, and try not to worry. I will have to look into that medication that you mentioned may have been some help to you. Please let me know if anything else you happen to take relieves some of your symptoms.
I hope you receive the appropriate diagnosis soon, whatever it may be. I know it's frustrating not knowing.
((hugs))
Last edited by MaggieClaire; 01-10-2011 at 03:33 PM.
Reason: made corrections
Facial pain, muscle spasms 
