Focal Dystonia of the Hand, and what the Brain has to do with it

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Biology 202
2001 Second Web Report
On Serendip

Focal Dystonia of the Hand, and what the Brain has to do with it

Henrike Blumenfeld

The body is complicated, and often the origins of a condition are all but obvious. Focal dystonia of the hand is one disorder whose underlying cause has been found in the more recent past. Although it can be genetic (1), the form of focal dystonia of the hand I look at here is caused by environmental factors (2).

Focal dystonia of the hand is a condition characterized by a loss in motor control of one or more fingers. A single muscle or group of muscles is involved: muscles in the hand and forearm tense and tighten, with the result of making the hand (or part of it) curl (2). Musicians who have intensively practiced their instruments over a number of years are a group most affected by this condition. The reason is that focal dystonia can be caused by the repetitive movement of the fingers over a significant period of time. The condition was long known as "occupational hand cramp." (3). It can easily be misdiagnosed as simple overuse or stress of the hand (1). Although it may not be obvious at first sight of the symptoms, the level at which the problem is caused is not the hand, but the brain.

Researchers at the University of Konstanz report "overlap or smearing of the homuncular organization of the representation of the digits in the primary somatosensory cortex" (3). Given that functions such as motor control cross over from the right side of the body to be represented in the left hemisphere, they found that the distance between the representations of individual fingers was smaller in the somatosensory cortex side corresponding to the hand that had undergone continued repetitious training (the left hand in case of violin players for example).

What does all this mean in terms of the brain? Looking at the central nervous system as an input-output system, in very simple terms we can observe that a specific input is presented over and over again - in this case the stimulation of the fingers that play the violin - and as a result the organization within the box changes. More specifically, there is a one-to-one correspondence between input and internal representations of this input: all fingers are individually represented on the somatosensory cortex. But somehow, as these regions of representation begin to smear or overlap, the one-to-one correspondence is blurred.

And the result? The problem turns into one of perception and motor control. Subjects with dystonia of the hand consistently are unable to localize light pressure stimuli applied to the tips of the fingers on the correct finger(4). Further, fingers in question cannot be moved individually, and specific movements or movement sequences cannot be controlled any longer (5). We get similar effects in blind people who read Braille with several fingers at once: they develop a single representation of all these fingers on the somatosensory cortex, but are not able to determine which part of the information received in the brain comes from which finger (6). Psychologist Thomas Elbert further points out a parallel of this in all of us: our toes are generally stimulated only simultaneously as we walk, and most of us have trouble telling which of the middle toes has been touched upon application of a light pressure stimulus. Indeed, our toes are not individually represented on the somatosensory cortex as our fingers are (6).

As we can see, through some process, representations in the brain have become reorganized in a way that makes it difficult to distinguish between certain afferent inputs. These inputs enter the peripheral nervous system close to each other, say via two adjacent fingers, and have been presented to the system simultaneously over and over again. The examples are stimulation of the first and the second fingers in quick musical sequences - so quick that stimulation can be seen by the system to happen simultaneously - or continuous use of several fingers in reading Braille (6).

This continuous pairing of two (or more) stimuli, until their representations in the brain merge, is not a new idea. It has been established that if two connected neurons are stimulated at the same time, the connection between them is strengthened (7), and rules of associative learning have been based on this idea. Fittingly, Dr Merzenich of the University of California San Francisco calls focal dystonia of the hand a "learning-based catastrophe" and a "failure of the brain's learning processes" (5). Consequently, he focuses on developing techniques that will help to "re-normalize the learning system", in helping to newly distinguish the areas on the somatosensory cortex that have become blurred. Although this approach is very new, Merzenich claims some good results in training children with linguistic impairments, such as dyslexia, which show similar blurring of representations in the brain (5).

The form of focal dystonia of the hand that is caused by repetitious training of two or more inputs is a clear indicator of the brain's ability to restructure itself. Traditionally, the belief has been that the capacity to restructure is present during childhood, and that the adult brain shows little room for change (6). However, as we can see, the adult brain is still capable of rather far-reaching change, and the old view of a hard-wired adult brain is thus being challenged. Further, we have seen that the central nervous system reacts to the kind of input it receives from the outside world, and the context this input is presented in (what are other impulses presented at the same time?). According to what these inputs are, there seems to be at least some leeway for the brain to adjust, in order to process these inputs in a way that may be more efficient. Indeed, this movement towards efficiency is fulfilled in the combining of various fingers into one larger representation in blind readers of Braille. Those skilled at reading Braille with multiple fingers are quicker than readers of Braille that use only a single finger. However, focal dystonia of the hand also suggests that there may be some rare inputs (such as long-term repetitious practicing of fast musical sequences) that "trick" the central nervous system into making changes that are clearly less beneficial.

 

WWW Sources

1)The most dangerous medical condition of all: Focal Dystonia, Largely anecdotal site about musicians' experience with Focal Dystonia

2)Research: Recent Findings Lead to New Understanding of Dystonia , More technical but very informative article about Dystonia from theScientist, subscribe for free to access

3)Focal hand Dystonia in musicians, Short and accessible summary of ongoing research activities at the University of Konstanz. Further links on the dystonias available from this site

4)Cortical Representational Plasticity, Brief research summary on brain plasticity, repetitive stimuli and focal dystonia

5)"Catastrophic Breakdowns" in the Brain's Learning Systems, Article on Dr Merzenich(UCSF)'s research into focal dystonia, other neurological disorders, and his theory about seeing them as breakdowns in the brain's learning system

6)Radio National Health Report on Brain Plasticity, Transcript of an interview with Thomas Elbert of the University of Konstanz about focal dystonia in musicians and Braille reading.

7)Enchanted Mind: Brain Plasticity, General site about brain plasticity, the learning process, and how to maximize this process.

 

 

Continuing conversation
(to contribute your own observations/thoughts, post a comment below)

01/03/2006, from a Reader on the Web

I was diagnosed with Focal Dystonia in my writing hand in early 1999. I was treated with Botox but they gave me too much of an injection and my arm/hand was paralyized temporarily for approx. 2.5 weeks. My writing became much better for about 1.5 weeks after the injection but the pain before the progress was not worth it for me to go back for more (approx. 300.00 cdn per dose). I suffer more so today and can barely hold a pen anymore and if I do it is only for a few minutes and my arm and hand ache for a few hours following. My question is: Does stress or anxiety or depression exacerbate the dystonia i.e. nervous and excessive shaking of the hand? Is there anything else I can do to help myself?

 

Additional comments made prior to 2007
I was diagnosed with Focal Dystonia about seven years ago,i also had the botox injections in thirteen muscles in my arm and hand,it was the very painfull. It caused my fingers to be stationary in one position and i had to use my other hand to straighten them. I also went to occupational therepy and they treated it as carpal tunnel.I have been right handed all my life, now i have taught myself to write left handed and do just as well. I have mastered printing but my cursive writing is still alittle bad, but ledgible. My work requires alot of writing and my brain still thinks i am right handed, because i get frustrated sometimes because i put writing off as long as possible, then i get behind and have to rush to get it done. I hope that this never effects my left hand because it would definately change my whole life ... Virginia, 22 March 2006

 

 

This condition can be overcome. I have just been watching a TV1 New Zealand programme on the life to date of pianist Michael Houston. During this it was revealed how he was severely affected by Focal Dystonia for about five years. In particular this condition was aggravated through learning, performing and recording the 32 Beethoven piano sonatas in the space of about 3 weeks.

 

Through the interventions of a sports physiotherapist, an acupuncturist, a doctor dealing with the development of the muscles of the body, and pianist Rae de Lisle, he has overcome this to the extent that he has been able to make a full return to being a concert pianist. He had been advised to quit piano playing because of the condition, but neither he nor his supporters agreed with this suggestion, and the results of their endeavours is a happy one ... Brian Swale, 10 June 2006

 

 

Well, maybe my diagnosis of this dystonia thing has come to rest. I am not a musician, just an average 50 year old woman who is right handed and if you can call anything fortunate about my condition is that it has affected my left hand. Left index finger acts the weirdest, but my left hand just acts funky. My journey to this diagnosis hasn't been as weary as some I have juat read about. It's taken about 3 doctor visits - fisrt to a hand surgeon who then sent me to a neurologist who then ordered an MRI, and MRA and then fun of all fun, an EMG. Which at one point, I was tempted to get up off that table and stick the needles in my boyfriend who had dutifully been holding my feet down during my jerks from the electrical shocks. Yes he really loves me. My question now - what now? My dr. prescribed the drug they use in treatment of Parkinson's disease. This whole experience is starting to get on my last nerve. Any advice, words of wisdom, comfort......is welcome ... Mary Wade, 1 August 2006

 

 

I would like to correspond with any others who have been diagnosed with focalized dystonia of the hand. I have been the whole gambut of meds, botox, and so forth. Nothing has helped ... Diane, 8 October 2006

 

 

Hi... not really sure if i should say anything at all here... but i was reading where u had been diagnose with focal hand dystonia in 1999. I have it to and i belive that it started in the fall of 2002 and really devloped in 2003 and it started out that i could not printed the digit 7 i can make the horizontal but not the vertical part of the seven.. i have been to the institute of health in bethesda maryland.... my question to you is this ... how and why does it start where does it come from.. and what can we do to get rid of it.... thank you ... Craig, 10 October 2006

 

 

I am a physical therapist who has worked with all types of soft tissue injuries and nerve entrapments throughout my entire 47 year career. In 1972 I discovered that by the systematic 10 minute wrapping of involved muscular groups, I could slow the chemistry of the muscles and thereby temporarily decrease their irritability. After a number of wrappings the tissue returns to normal. Muscle is contractile by nature. Its job is to move the bones, and it can only contract. Muscle lengthens only when the opposing muscle group contracts. After overuse or injury, muscles sometimes become confused and begin to contract on a reflex basis in cooperation with the spinal cord. The surrounding tissue becomes filled with fluid and can be hot or warm to the touch. A forearm often feels like a sausage instead of being soft and pliable. Healing can cause hard restricted bundles of muscle fibers to form within the soft tissue. These areas must be released and the tissue pliability restored to regain smooth coordinated muscle function.

 

When confronted with reflex activity the patient endeavors to perform his normal activities. Because his muscles don't respond easily, larger stronger muscles are often recruited on a voluntary basis. The brain is then involved. These larger muscles overpower the smaller muscles and result in the development of faulty movement patterns. Contracted and distorted muscular patterns often result along with nerve entrapments and strange patterns of functional movement.

 

These complex neuromuscular problems can be resolved by wrapping the involved sections of the body with moist medium weight terry cloth towels filled with natural ice, and then gently massaging and stretching the involved musculature. Treatment is given with the musculature resting in a plane neutral to gravity. The inherent contractility of the muscles must be respected. Rough treatment of the unhappy muscular tissue can make the condition worse. Reicing of the areas further decreases the irritability of the tissues. During the application of cold, the core temperature of the patient's body is kept warm by the application of large abdominal hotpacks or by placing the patient on full body heat.

 

Two weeks after the soft tissue returns to normal, reeducation of the faulty voluntary movements can begin. Frequently the most basic of fine movements must be taught first. Use no resistance. It is a bit like reeducating poilo patients after they have forgotten how to move. Relaxed movement must be taught through all ranges of motion. Sometimes the patient has never learned to do relaxed movement, and it is a foreign concept to him. Patience is required on both the part of the teacher and the student.

 

I love working with these complex cases and get excellent results. I use every type of technique which I have learned in my career as a physical therapist, synchronized swimming coach, ice dancer and performer. The cases are fun and mentally stimulating. I encourage you to start using cold to decrease the irritability of the muscles. Ice works quickly and effectively and is a very effective therapeutic tool ... Elizabeth Morris, 10 January 2007

 

 

Focal Dystonia of the hand question related to stress. When I am rushed or stressed, my writing hand (the affected hand) is practically useless. For unexplained reasons my hand will periodically print pretty well but writing is out of the question. The cramping is terrible and yes, I do think stress exacerbates this painful condition ... Barbara Perrin, 21 January 2007

 

 

Good contribution. Focal dystonias are typically enhanced by Anxiety/stress, and treatment may be helpful (especially when dystonia and essential tremor are paired). Retraining is worth a serious try,but exercise intolerance is a limiting factor. Botox injections can work (if dose is correct) for up to several months, but may cause rebound worsening. Med alternatives include beta blockers (e.g., propranolol) to reduce tremors and performance anxiety), certain anti-seizure meds, and antiparkinson agents may be tried. The link between dystonia and mitochondria oxidative posphorylation may suggest a role for Coenzyme Q10. Feedback would be of great interest ... SM, 4 February 2007

 

 

After having consulted with various specialists regarding the emergence of focal dystonia in my Right Hand litte and ring fingers, and after persuing your information, I was wondering if you have any suggestions regarding the alleviation/'cure' for this problem?

 

My problem developed spontaneously in approx February/March 2006, as a result of a 12-year period of being a typist, and consists of the said fingers 'curling' or 'bunching' up after no more than perhaps 5 words (after being capable of 130 words-per-minute). There is little pain, and perhaps an occasional aching sensation.

 

It can also occur with prolonged use of chopsticks, but to a much lesser degree.

 

It has been suggested to me that a magnetic wrist band may be of some benefit, and after consulting with a neurologist, it appears the neurological pathways are of normal conduction.

 

Any advice you may be able to offer would be greatly appreciated ... Kris Penny, 28 February 2007

 

 

I have been diagnosed with focal hand dystonia since 1999, I had just finished RN school and had been writing more in the last 5 years than in my entire life. I went to a neurologist and have been on beta-blockers and trialed many other medications for parkinsons and even requip without success, I have had 4 botox injections over the years and all did not improve my writing and the last left my index finger numb and still having trouble, the combination of inderal and clonazapam seem to help me write better, but I am looking for more information on treatment to help me write, I posture and hold my hand strangly to write, I perform many tasks as an RN and without shakiness but simple writing makes me shake and is begining to affect my performance. Do you have any suggestions, I also tryed hand therapy but the therapist was not even familiar with my problem and not helpful at all. Also can you suggest anyone in the seattle area that is familiar with this problem because my neurologist is not sure what else he can do for me. Any information would be helpful. I appreciate your time ... Mary Hutchins, 25 April 2007

 

 

I have been diagnosed with focal dystonia in my right hand this month. It appears it is made worse by stress, but not really fixed by calmness. My solution is to write with my left hand - the condition does not usually spread from one hand to the other!

 

Perhaps you could try that. It's hard, but much easier than writing with the affected hand.

 

There is also a relevant website: dystonia dt org dt UK ... Richard Donkin, 30 April 2007

Comments

kofo Martins's picture

Focal Dystonia

Please notify me when new comments are posted.

Serendip Visitor's picture

Focal Dystonia writer's cramp

Diagnosed in 2011. Court Reporter. Can no longer hold pen properly and no printing or writing. Was told I had a 50 to 70 percent chance it would move to my left hand; it has.

It is now becoming generalized and I have myoclonic jerks on my left side which is the leg and shoulder; all primary being focal dystonia, over-usage, writer's cramp from my occupation.

There is no cure. Learn to compromise in your physical abilities, and take care of yourselves. That is the only present alternative.

Ravikumar's picture

Overcome Focal Dystonia

I have been suffering from focal dystonia from 2008. My right hand got affected due to excess of blog writing. As many of you, I had consulted n number of doctors, physiotherapy, acupuncture. Nothing worked out. Finally, I was prescribed the following two medicines:

1. Pacitane (2 pills/day - Morning and Night)
2. Clonam (1 per day - Night)

I dont say I am completely cured but I am definitely feeling better everyday. As per doctor's advise, should have it for lifetime. Side effects of these pills are drowsiness and slight stomach upset. You will feel like sleeping initially but would overcome over a period of time.

In general, mind should be very calm. Never think of anything. Be cool. Be calm. You surely would overcome focal dystonia

Cheers,
Ravikumar R
India

Mary F Wade's picture

cool and calm

I am sorry to inform you BUT, being cool and calm has no affect whatsoever on focal hand dystonia. I have not been able to use my left hand to do squat, nada, nothing for about 4 years now.
thank you,

Mary Wade

Cody's picture

Trigger Finger

My mom was diagnosed with trigger finger a month or two ago. At the time she had a relatively mild case but the severity was increasing fast. The doctor talked to her about shots and surgery along with rest but i didn't like those invasive directions and she didn't want to not use her hands. I started looking for some other types of recovery and found a Trigger finger splint! I found a great trigger finger splint for only $20. My mom has been wearing a trigger finger splint since i discovered it and feels a million times better!

I highly recommend this to anyone looking to treat Trigger Finger

Good luck!
Cody

Colton Touvell's picture

focal dystonia left foot

I was diagnosed with focal dystonia in early 2011 and I have been seeing a neurologist and a movement specialist for a little over a year now I'm currently an active duty marine and I'm getting medically retired in may I have tried a ton of different meds and I went for a series of Botox injections and none has helped so far I have trouble walking and I can barley wear a shoe I'm in pain a lot of the time so they put me on pain meds but I don't want to take pain meds like I am because there are a lot of long term problems that come from it one of my doctors has suggested amputation and I have even considered it because I hate being out of commission like I am I was just wondering if anybody had any good advise for me because its gradually getting worse and I don't know what else to do

Serendip Visitor's picture

Active Marine with dystonia

Try using a PEMF pad placed on your lower back with both arms on the pad. See if there is a practitioner in your area, and check out Doc Oz and his info about Pulsed Electromagnetic Fields. Theory is that the electromagnetic current can lubricate, reinstruct or fire any of the joints muscles or soft tissues that are inflamed. I have a friend diagnosed with dystonia in her left hand. She tried the PEMF pad application, and is doing much better after about six weeks.

Mary Wade's picture

focal dystonia

Dear Cotton,

I have focal dystobia in my left hand. My dominant hand is my right hand. My left hand is a curled up mess and
i can't use it for sheeeeet. It wasn't painful until my fingers were contracting so severelyI had a hard time getting to sleep. I had botox injections and they relaxed it enough to where I was no longer in pain. I just underwent my second round of botox about two weeks ago. I'll be going to an orthopedic specialist to have some kind of contraption made to keep my fingers open. I'm surprised your doctor recommended amputation. Because the dystonia usually progresses. I have a little difficulty with walking myself as the dystonia appears to have migrated some to my leftf leg, specifically my left foot. I have to make an effort to lift my foot up when walking. It tends to drag. Isn't this dystonia a kick in the butt! Where are you stationed? My son is a Marine, not active now. Two tours of Afghan and he was stationed at Cherry Point. He was COMBAT ENGINEER. wHEN WE DO TALK ABOUT MY HAND HE LOVINGLY REMINDS me he has a sharp machete in the garage. But fortunately my hand is not causing me any pain at the present. My neurologist doesn't like my suggestions of cutting my tendons to relax the contraction. So, botox is about my only choice right now. Meds did nothing except make me sleepy. YUK! I would think amputaton would be the very last resort. But I can assure you, when my hand was causing me constant pain, the thought crossed my mind. But then there is "pain from the phantom limb". All I can say is hang in there. Have you gotten a second opinion? I'm also fortunate because I live in Houston, home of one of the best medical centers in the country.

I would be a lab rat for any trial no matter the risk.

email any time you're having a hard time. I don't work anymore and live on disability. That's fun in and of itself.

AND PRAY

Sincerely,

Mary F, wade
oooooooooooooooooooooooohhhhhhhhhhhhhhhhhhhhhrrrrrrrrrrrrrrrraaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhh

Colton Touvell's picture

I'm currently stationed in 29

I'm currently stationed in 29 palms I'm a tank mechanic my left foot has gotten so bad I can't put it in my boot and I can barley walk most of the time I've had 3 rounds of Botox and it really hasn't helped and I've tried so many meds I feel like a Guinea pig my neurologist Is the one who suggested amputation because I'm so young he thinks I would recover quickly and have a relatively decent standard of living where as now because of my limp and crutches my back and hips are shifting out of alignment he thinks it's only going to get worse have you tried anything besides Botox that helps? I'm moving back to Ohio and we have Cleveland medical center and that is about the only really good hospital we have I'm getting medically retired so everything is going to be covered I'm just glad someone else knows what it's like to have this problem I'm sorry you have it but its just nice to know I'm not alone an I've messages different medical groups and no responses so far.

Serendip Visitor's picture

I was tested with electrodes

I was tested with electrodes about 9 years ago and have weakness in my left writing hand and carpal tunnel in the right. I got to where I could barely write. The doctor told me to just make my grocery list on the computer since typing was no problem. Such a rude sexist remark was not helpful. For years I have not written checks, letters, or much at all. It is very irritating to realize how much writing is still done in life until it can't be done. I'm not sure it's stress related but have noticed it's worse when very tired or sick. I recently had to write up a family budget and some lists and suddenly realized that my handwriting is almost normal. Who knows if it will last though. The only thing I've done differently is quit typing during computer use due to getting a kindle fire touch screen.

Richard Lewis's picture

More information on zinc

I forgot to add, that you must take the zinc on an empty stomach because certain foods, such as seeds, beans, or any food containing phytates will prevent the zinc from being absorbed....and too much copper in the diet will also deplete your zinc.....

Serendip Visitor's picture

Zinc improved my focal dystonia

Hi everyone, I am a 65 year old flamenco guitarist who developed the disease when I was 49....It wasn't until about a year ago that I accidentally discovered that if I increased my zinc supplement dosage from 20mg to 75mg a day because of an enlarged prostate, that my focal dystonia in my left playing hand became less severe..I am also taking ginger, boswellia, bromelin, and coconut oil which all reduced inflammation. I also discovered when I read the "bulletin board" at the "Musicians with Dystonia" website, that there were a few other guitarists with focal dystonia, who also had a similar improvement in their playing hand when they increased their zinc....I would advise everyone to read the posts at the Musicians with Dystonia website for much more information about the results of all of these musicians who are taking the additional zinc....There are also 3 other supplements that seem to slow down the brain's over firing neurons that seem related to the focal dystonia...They are: Taurine, Glycine, and GABA. The heading under which these posts are listed is under the title of: "Rubber Band." I used a rubber band wrapped around my 4th and 5th fingers which also seemed to help me play better due to the focal dystonia....It seems to fool the brain, which is what you must do in my case......Good luck to you all with this information and hope that you all get good results.

Serendip Visitor's picture

por Distonerias

Hola

I'm also a flamenco guitarists that has been stricken with dystonia on my right hand middle finger. It happened gradually about two years ago. I thought it was due to me trying out IA rasgueo with a relaxed middle but I not fully convinced that was it. It has now gotten to the point that my middle finger curls in the moment I place my right hand over the strings and every single technique is affected. Especially tremolo and arpeggios which I had easily done before with great speed and accuracy.
I interested in the Zinc and possibly trying GABA. Do you use a particular brand?

Saludos,
David

kapil jain's picture

Diagnosed with Focal Dystonia

I have been diagnosed with Focal dystonia recently...the neaurologist told me that there is no permanent treatment for this desease...although he told me to have Botox injections once in about 3 months... Recently i have read so many articles related to side effects of botox as it may lead to Paralysis or something like that..or it may not effect at all.. so i am much afraid of having botox injections... Can anybody plz tell me if there is any alternative therapy for the treatment of Focal Dystonia ?? plz help me out guyz....

Myra's picture

focal dystonia on the right hand

In 1994, I was involved in a motor vehicle accident and almost took my life. With the good doctors and nurses, but most of all, the help and love of my Mother helped me back to almost as I was before the accident. However, with all the injuries I sustained, no one is able to tell I was put back together with rods and screws. The happened to me while attending nursing school. Wow, this really set me back, both my ankles were broken alone with both feet. I did have a head injury on the left side of my frontal lobe which healed and there is no scare that shows a surgical cut. Matter of fact, the left orbital area of my eye was broken. Glass was embedded into the skin, it was several weeks after 2 surgeries the glass was still surfacing from the windshield that put it in their. Any way, my head injury did mess my short term memory for several weeks. Now, that was a good thing, because from what I was told by my sister, who was riding behind me on the highway saw the whole accident. She said I had bones sticking out of my right knee that was pinned under the dashboard. They were unable to remove me from the side of the car because of the car being mangled. Now, all this time, there were no paramedics there to tend to any of the people involved in the car accident. Since my brother in law was a volunteer fire fighter, told the medics not to waste time removing me from the side of the car. He suggested to break the back glass of the rear of the car. He fast thinking really helped. However, due to my head injury, I began to seize. Luck for me there was a pregnant nurse caught in traffic that was out there taking control. She explained to the medics to administer O2 to me. She can hear I was gurgeling. My head injury is called a bad head injury ( concussion ) no, it is called a cerebral contusion.

When a head receives an injury such as a concussion or a contusion it does leave a lasting effect. It can be something small, but, it is a bruise on the brain. I had a bad one. Now, my so called "normal self is back." The only thing is I don' r remember that serious almost fatal car accident. My memory is back. I was able to continue nursing school and survived a divorce. However, One year later, as I went back to school, I began to notice a difference in my penmanship. My handwriting was extremely good that I would save my notes and re-write them as a way of studying and loaning my notes out to other classmates. But, as time went on, I was having so much trouble holding a pen. I must have bought hundreds of ink pens to find one that was comfortable for me to write with. I even asked instructors if I could tape their lecture. Some of the instructor didn't want me to do that. So, I didn't. I missed many notes and was unsuccessful in those classes.

I refused to give up on nursing school because of my hand writing. For years, I did so much research and saw many doctors. One doctor finally diagnosed my condition as hand writers cramp call Focal Dystonia. I knew it has something to do with muscles. I did some more research. The doctor wanted to put me on Parkinson medication. As a nurse, I knew there were some side effects this medication has, as do all meds. I did want to deal with as much as I wanted to write and as much as I needed to write. Again, back to the drawing board and found another treatment for me is injections of Botox. That is when I realized Botox serves just as much for health reasons than cosmetic ones. I also found out by accident, Valium helped relaxed those muscles. It was like wow, I found a solution. Now, both Botox and Valium didn't cure me, but since 2008 till now 2014, it has served its purpose. I don't have to take the Botox every 3 months. It lasts about one year. I do take a Valium every night at bedtime which that could be a reason I don't have to take Botox every 3 months. The down side of using Botox is one has to do the trial and error before finally finding the right dose and the right muscles used that are affected. When the Botox is first injected even after all the years I am using it, It does leave the hand slightly paralyzed. But, it has to, However, when it begins to work about 7 to 14 days, you will know. A patient will have trouble holding things even a hair brush. But, it is so well worth it for me. After the doctor finished injecting my arm she would dispose the rest of the meds in a sharps box. Then she remembered I did take a beating in the cervical area of my spine 2 times. I was involved in another car accident. It was not as bad as the first but, it certainly inflamed my cervical region of my spine, so much, that pain was controlling my life. The doc injected the rest of the Botox in the area of my neck that hurts, I didn't have to take anything for pain.

So, yes the Botox, works for me and I don't need it every 3 months. My biggest problem now, is that my current insurance is not covering that. So, bsck to the drawing board. I pray please let me get relief. We take advantage of our body

Mary Wade's picture

response to the above

Try calling Allergan, the maker of the Botox my doctor uses, and probably yours. They have a program that will pay for the botox used in your treatments. Thar's how I am able to still get botox for my left hand. Good luck.

Please feel free to contact me directly at if you have any other questions or comments.

Mary Wade

D. Richard Lewis's picture

My Focal Dystonia is 75% Gone!

I am an amateur flamenco guitarist who began to play at the age of 16. At the age of 49 I developed focal dystonia so bad that I had to stop playing. I am 65 years old now and suddenly I noticed I can play the guitar again with only a slight cramping in my left playing hand. I believe my condition improved due to the exercises that Jason R. Solomon wrote about in his article: "What Every Guitarist Should Know: A Guide to the Prevention and Rehabilitation of Focal Hand Dystonia." which you can find doing a Google search. I also believe my condition improved due to the many vitamins and anti-inflammatory herbs I am taking, like boswellia, ginger, krill oil, and coconut oil which give the brain added fuel. Since focal dystonia is neurological condition in the brain, anything that will improve the brain's performance, such as these health supplements that reduce inflammation should be taken
regardless of the focal dystonia. Experiment with these supplements to see if you get any results....Anything that will reduce tension in the body is also useful for this condition I noticed as well.

Indramal J. Fernando's picture

Focal Dystonia

This is just what I have been looking for !!

I am also a gutarist (more classical, play a little flamenco as well) who started at the age of 15.
Today I am 67,still trying to continue playing, with much difficulty because of this dreadful condition of Dystonia in my right-hand fingers.
20 years ago I dicovered , during a concert, that my ring- finger movement was suddenly behaving a little crazy!
I underwent several therapies seeing about 25 medical specialists.However,the condition very slowly worsened.
During this period my right-hand underwent 3 operations, twice for Carpal tunnel and once for Trigger-finger, after
various diagnostical tests.
Now I am taking Botox injections once in 3 months as three fingers are affected. I am not happy with the results

RobH's picture

voice disorder - similar

I have a voice disorder and I'm keeping a running blog of my experiences here: , hopefully this will have a happy ending. :)

ashish's picture

focal dystonia of hand

i have focal dystonia of hand from past 12yrs.i had taken many sedatives,tranquilizers,anti parkinsons medicines but nothing works.then practiced writing with my left hand.i think this is the only solution till date to overcome this problem.almost every indian doctor tries to make a fool of you as they know that till now no treatment is there for focal dystonia but they will not tell the patient and makes money with costly tests and consultaions.

Serendip Visitor's picture

adaptive tools

I have dystonia in my right hand and have since 1999. I just starting seeing an occupational therapist for the first time. She had me try many adaptive tools. One in particular helps the "writing bird" It is about $20. It helps with most writing but not small print like on forms. Does anyone have anything else like this that helps?

kenya1's picture

help!!!!!!

can someone please help me get the right drug for this focal dystonia of the right hand. this thing has been wth me since 2005. i cant write, use a spoon/fork,brush my teeth etc.
i have tried a varity of drugs including alter ative hrbal concoctions. please help!!!!!!!!!!!!

Jess's picture

Focal Dystonia (Right Hand)

I feel her pain:( The best medication I have found to work well for pain is called Lyrica (pregabalin). It is a drug that helps with nerve pain, it has also been found to help in individuals with fibromyalgia- a common syndrome in which people experience long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, anxiety, and other symptoms... Sorry, I am getting off track but my point is it doesn't say "helps with focal dystonia pain," but it is the most helpful medication I take. Unfortunately, this medication makes me retain fluid. I am able to take this medication once a day 200mg at bedtime without noticable edema. If she asks her Doctor about it, I bet they will try and prescribe a cheaper drup called Neurontin or its generic name Gabapentin. This drug didn't give me the results that Lyrica did but the other drug is cheaper, depending on her insurance situation, I thought I would throw that in. I wear a carpal tunnel brace at night, it helps reduce my muscle spasms and therefore I sleep better. Tizanadine is the muscle spasm medication I take, it can make you tired. During the day I take 1mg and at night 2mg. I hate to only name drugs but not much else has work for myself. I do find some relief from a heating pad around my hand at low tempatures for about 15 minutes. Oh, I almost forgot the best medicine.....go to a massage therapist, does wonders in loosening the muscles to reduce the muscle stiffness which reduces my muscle spasms.
I thought I was young...Tell her to keep strong. Medicine is progressing, doctors may not know much about the disorder but strides are being made in the right direction. Make sure she finds a movement specialist to direct her medical care and track her progress. If you have any other questions or just want to run an idea by or something that she has found to work, please keep in touch.

Good Luck.....Jess

deepa's picture

dystonia

Very interesting post i liked it a lot. Great work.

Brenda's picture

Focal Dystonia

I too have right hand focal dystonia. I also have Relapsing Remiting MS. I've been told the two are not related. I'd be curious to know if others out there have both things.
I went through the gammit for diagnosis and I tried Botox shots which hurt like hell and didn't really help. I've decided that I won't go through that again. After much practice I have become very good at printing with my left hand. For some reason cursive writing is more difficult. I have resigned myself to the fact that this is a life long affliction and I am ok with it now. Wish I could use my right hand again to write but am very grateful to have a left hand to resort to. There are much worse things in life that could happen. This is annoying but will not kill me. I wish you all the best and hope that you too will accept this curve ball and adjust accordingly.
I have used the following things to help me: At work I created a template and only need to fill in the blanks for deposits, etc. I keep an MS word document opened at the bottom of my screen and use it to take phone messages instead of having to write. At the grocery store I use my ATM debit card or have the clerk run my check through the cash register. I have my husband sign cards, do envelopes, etc. If I want to enclose my own words in a card I type them up, use a nice font and after I print the message I use two sided tape to adhere it to the card. Hope these hints help you too!

Best of luck!

Sharon Sheltzer's picture

MS and Focal Distonia

Brenda:
I too have MS and Focal Distonia; in fact, my MS doctor diagnosed it. She did not know of any relationship between MS and Distonia but my intuition told me otherwise. I did some research and there is some information linking the two. MS affects the brain and the nervous system as does Distonia. Not that it really matters, does it? I recognize your coping approach; finding solutions to work around each new problem as it presents. I've decided not to try the Botox as I rarely see any positive reporting on the results and just today I decided to start practicing writing with my left hand. I also bought a mini laptop to take notes at meetings. I hope it doesn't stop me from typing- any feedback on that?

Jillian's picture

MS and Dystonia association

Hi,

I was diagnosed with RRMS 4 years ago and very recently was diagnosed with the MS symptom Paroxysmal Kinesigenic Dystonia involving my left leg and hand. My hand and foot twist and turn when I initiate movement. My fingers will sometimes splay outward but my hand will sometimes turn at the wrist and the fingers cup and bend inward toward my wrist. (Does any of that sound similar to focal dystonia?). This hand twist/turn will occur at the same time as my foot pronating outwards and my toes curling under. I am currently being treated with an anticonvulsant Gabepentin and previously Dilantin without much affect on pain or frequency. This happens practically everytime I move, walk or lift my left arm.

Mine is painful to extremely painful when it happens. I am forced to stop what I am doing when it happens. Each episode usually doesn't last longer than a minute if I don't fight it and try to keep moving the appendage . If I keep on moving I tend to get stiffer in the leg and foot and the hand bends and cramps longer.

Jess's picture

Focal Dystonia (Right Hand)

I had a right carpal tunnel release and a ganglion cyst removed in 2008. I went into the surgery being able to write with increased pain in the right hand, wrist, and arm with cramping of the right hand. After the surgery I was unable to write at all. I put the pen to the paper but my brain isn't able to communicate with the hand to move the pen. Like many others, I taught myself to write with my left hand. When I write with my left hand, my right hand along with my fingers move around with a mind of there own. My right hand curls inward, all fingers along with hand are involved. I have a slight tremor and involuntary muscle spasms in my right hand. I returned back to my nursing job after 3 months of trying to regain control of my hand. As time progressed the job was getting harder and harder for me to perform and keep up. The pain has moved from just the fingers, wrist and hand to both hands and fingers, wrists, arms, shoulders, neck and causes severe headaches. I am at the point that the pain never stops, I am able to manage my pain at a level 3 out of 10 at best. I have been to several neurologists, a movement disorder specialist, neuromuscular therapist, and a chiropractor. I have tried many different treatments with no success. Here in Maine my neurologist doesn't have a clue what to try next. I decided to make an appointment at Brigham and Women's Hospital in Boston Mass. I saw Dr. Sharma, a movement disorder specialist. They took down my medical history, recorded my symptoms and performed the normal neuro checks. Dr. Sharma is personnally contacting each of my Dr.'s to look at the whole picture. I will keep in contact to let you know how it goes.
I just wanted to mention, if you are in pain from this disorder try lyrica. I take tizanidine a muscle relaxant which helps a great deal and lyrica which helps with nerve pain.
I have one question for Dr. Jou, the touch and hold method is that the same as releasing trigger points?

Emerson Jou, M.D.'s picture

Dystonia and Restless Hands

Dear Jesse:

First, to answer your question regarding trigger point. To me, instead of trigger point, I consider it as tender(very sharp pain)point due to fascia injury. And yes, it can be resolved by Touch-and-Hold. You seem to have suffered extensive soft tissue injury in many parts of the body, as very commonly seen in women. As for your hands, it started out as dystonia, later worsened into "restless fingers, hands, wrists". They are all derived from localized soft tissue strain, more fascia than muscle. Brain has nothing to do with it. "Restless hands" is a more severe and extensive form of soft tissue injury than dystonia, more commonly seen in "restless legs syndrome", not a movement disorder. Such a mechanical injury must be treated and can only be cured mechanically, but not by any chemical means. Using Touch-and-Hold, strained tissue can be released, pain resolved and function restored within a short period of time, more time is required for "restless" conditions. Headache is also caused by fascia strain on the scalp and can be easily treated and even cured.

Emerson Jou, M.D.

ABHISHEK's picture

FOCAL DYSTONIA

Helloo, I am suffering from focal dystonia of right hand since 2 years. I am unable to write by my right arm and Pen is often slips while writing.To cure this disease,I went to neurologist before 2 years where he was prescribed me tablet Pregabid. but that was not beneficial for me.Before three months, I was experienced pain and weakness in my right hand from right scapular region to the right fingers. So my old neurologist was referred me to another neurologist in higher centre where i took four BOTOX injections on my right fingers and forehand and prescribed me tablet Revocorn(tetrabenzine). Due to this tablet my pain was reduced and can also aggrevates if discontinued this tablets.But still iam not able to write properly even after taking botox injections, my handwriting is so bad than before also have anxiety.My exam is near in next month.Tell me what should i do. Is it curable? if yes then kindly suggest me proper treatment.waiting for your reply.
Thank you.

Serendip Visitor's picture

Bogus Claims

Some of the claims listed here are truly amazing. Have the authors not read, understood and inwardly digested the fact that Focal Dystonia of the hand is a neurological condition arising from the smearing of digital representation in the brain. For heaven's sake, read the article -

"Researchers at the University of Konstanz report "overlap or smearing of the homuncular organization of the representation of the digits in the primary somatosensory cortex"

Focal Dystonia is an extraordinarily difficult condition to treat with any degree of success - I should know. Despite the best efforts of the world's top neurologists there is still no known cure for FD, as any genuine medical authority will tell you. Yet despite all the evidence to the contrary there are unscrupulous people here who claim a miracle cure - that FD may be cured as easily as a headache is cured by aspirin. Perhaps if you show them the colour of your money they will also provide a miracle cure for cancer (any type), restore amputated limbs and even provide a quick-fix antidote against death.

Please, please don't be fooled into parting with your money to these charlatans and rogues.

PS - I'm selling magic wallets. However much money you spend the magic wallets always remain full. Yours for a bar of gold apiece.

Serendip Visitor Michelle's picture

I am interested in this as I

I am interested in this as I have some symptoms. I haven't been officially diagnosed, but as with one other commentor, I lost my ability to write legibly during nursing school. I am now a nurse and daily handwritten charting is required. I have also had random and inconsistent joint pain in both my fingers and thumbs...it is so strange. It comes and goes, but otherwise it just feels like my brain has 'forgotten' how to tell my hand how to write! Since I had never heard of this condition, I have been wandering the internet for some kind of logic on this, and found this page. It is a relief to know I am not nuts! Although I have not had permanent results, I wanted to share that I have had 3 or 4 days of relief by listening to a self hypnosis mp3 related to better handwriting. Strange, but true. I have to listen again about 1 or 2 times a week, but it helps...Good luck all.
Michelle

Dolly Rodrigues's picture

Focal Dystonia

I have read the blog about Touch and hold therapy by Emerson Jou, M.D... I will try this.
I have had this for the past 5 yrs. Also did CTS surgery. Cannot write or type with my right hand. Currently on medications prescribed by Neurologist.
If there is any cure for this disability then please let me know. Thank you.

Serendip Visitor's picture

Managing Focal Dystonia

Hello,
I was diagnosed with focal dystonia back in 2005. For a long time I thought it would just go away. It didn't. I tried every modality I could think of to cure myself but it wasn't until I realized that since the brain is a muscle and there is plasticity in the brain, I could create new neurons in order to be able to play my flute again. Then I started to cure myself. At this point I would not say that I am cured but I have created a method to be able to play using , as my chiropractor says, neurological biofeedback. I have kept in touch with the neurologist who initially diagnosed me throughout my healing process and she is amazed at my progress. She videotaped me playing in 2005 and now as she views recent videotapes of me playing she cannot believe it. I think it is time for me to help other people. This is the first e-mail I am sending out and I hope it is being sent to the right people.Please do view my website so you may see my videos. It would give me enormous pleasure to help other people be able to play their instruments again.I can corroborate every statement in this e-mail and back it up with my neurologist.
Thank you.

Andrea Brachfeld

Guido U-A-Sai's picture

focal dystonia

Hallo Andrea,

I'm Guido U-A-Sai from the Netherlands (City of Haarlem) and I also suffer also from FD. This is going on for almost ten years.
I'm a teacher (chemistry) and was, according to many people, a very good amateur classical guitar player.
I've read your email on http://serendip.brynmawr.edu/exchange/node/1743. I found this site by Google-help.
I decided to respond when I've read especilally your email.
If I understand your email well, you have instruction films and a website available that FD-people can use.
Can you please give me further information.

I also try to cure myself in the following way. I play very very slow with the help of a metronome (slowest position).
When I want to use my (problem)thumb -- the only one, and not the fingers -- , and 'it gives me a sign that 'it's going the wrong direction', then I withdraw my right hand immediately from the guitar. I think this exercise works.
I think, giving my brains commands what 'not to do' -- thus by withdrawing my hand immediately -- would help to 'rewire' the nerval signal paths.

Years ago I decided not to take botuline injections and I still don't regret that decision.
I think selftreatment (train the brains so that it 'rewire' signal paths to the 'original' position) must be possible,
but with a lot of patience.

I hope that I'm right and that you will answer.

Yours sincerely,

Guido U-A-Sai

Nicholas Kolev's picture

Focal Dystonia

Hello,

I'm interested what did you do practically to be able to play again.

Thanks,

Nicholas

Nelzimar's picture

FD

Dear Andrea,

I'm a cellist that also was diagnosed with focal dystonia 7 years ago. Nothing that I have done has worked. Could you please share with me what you have done that has helped you?

Thank you so much,
Nelzmar

Mark Coetsee's picture

"The Brain is a muscle"

Dear Andrea, the brain is not a muscle, neurons are not muscle cells and you cannot create new neurons in the brain.

ELZA A. CASTRO's picture

Distonia Focal

Sou quiropraxista em São Paulo, Brasil e estou tratando a 3 meses, um violonista com diagnóstico de Distonia Focal, desde 2008. Neste curto tempo de tratamento consegui reduzir substancialmente a inflamação, o inchaço e a mobilidade das falanges, além de não ter tido (por enquanto) as contrações involuntárias, porém, sinto que preciso de maiores informações. No que vc pode me ajudar?
Obrigada.

Nithin's picture

Help needed

Hi Andrea,

I am nithin from hyderabad in INDIA , my dad is suffering from focal dystonia .
I need some inputs on how you managed to find out a method to live normally with it.
Can you please gimme your email so that i can approach you.

Thanks
Nithinraj

Fernando - Visitor's picture

3+ decades coping with dystonia

Dear friends.

It’s more than 3 decades ago that I suffer from dystonia and many of its symptoms: pain, spasticity, lack of coordination, lack of skill, etc. I am also caregiver for my wife who has MS, and this gives me such a different perspective to neuromuscular problems. Despite the difficulties, I have been working since 2008 on a project, named Distoweb, which deals with dystonia and other related movement disorders (such as Parkinson's, etc.) from a positive, practical, dynamic and intuitive approach, taking into account both the physical and on the psychological aspects. The website has no banners, advertising or business opportunities. It was designed with the only purpose of sharing experiences, useful tools and understanding.

Good luck!

Fernando Hernández (Distoweb)

Kofo Martins's picture

Focal Dystonia

I have also been diagnosed with FB for over 2years. I would like to know how you have been been managing this disease with success.

Thank you.

K. Martins

Richard Lewis's picture

Focal Dystonia and Zinc

As I have said in my earlier posts on this site, I have found that if you take 60mg of the supplement: zinc, on an empty stomach along with about 100mg of vitamin B-6, that your focal dystonia symptoms will be greatly diminished. Other people have also noticed this when taking the above. And if you read the other information on my other posts, you might get further help....

Serendip Visitor's picture

Focal Dystonia & Magnesium + B6

I have had Dystonia since 1994 and just found out myself that Magnesium + B6 also greatly reduce symptoms. Very interestning stuff to read that a similar "reciept" have been working for other people. Magnesium will also make you feel more relaxed wich will often be a problem for us with Dystonia.

Mary F Wade's picture

focal hand dystonia

I take magnesium, but not on a regular basis. But nothing helps my hand relax other than botox, and even that doesn't work great. I just keep trying to learn to live without the use of my left hand. Big bummer, but it could be a lot worse as far as
other forms of dystonia go. Thanks for your info and response.. God Bless...
Mary Wade

umang's picture

FOCAL DYSTONIA

hi i am umang from india i am suffering from problem so called focal dystonia since 2007 by birth i am left handed everything i play cricket and all other game by left hand but in 2007 during my graduation emxamination i suddenly become unable to write with my left hand i had given exam with the help of writer after than neurologist visit and doing ECG all that no improvment in writing but after my exam over during that time i started practicing to write with right hand and i got success in that in just two or three month so my problem was solved during that periode but now in 2010 i facing same problem with my right hand and now i become unable to write with my both hand and as of my job profile i required less of writing skill but please help me to improve my condition.

umesh's picture

about writers cramp in right hand

hello mam/sir,
my name is umesh . I am right handed.I am a marshal artist I am doing marshal art last 7-8 years . when I was only 12 years old , i was crushed by tata sumo in my city Lucknow by which my left eye had been some small and my my right hand was also cracked and that time my family members bring me to set my right hand to baba ji who set my hand after setting few months i was feeling pinching in my hand. Thence
my neck pain ,writers cramp in my hand have not solved but others problems have been solved. I also do prayam like anulom vilom,kapalbati,agnisar,bastrika,udgeet prescribed by the doctor with marshal art (taekwondo).today i am 26 years old and I have completed my bca 2010 in Jan .

Please tell me honestly if any solution is available for writers cramp today beyond it otherwise my family ,friends are saying “you must start write with left hand ”
I have taken many medicines but I have no capacity to drug it.
thanks you
umesh kumar

Lee's picture

Focal distonia and this blog

Not a complaint but an observation. I received email this morning that someone commented on this blog and the assumption is that they were looking for a response. This is the first notification that I have received since I posted my experience back in 2008 and checked the box for notification of replies. In fact, I had forgotten that I posted here until this morning’s email notification of a reply. Scanning the blog I find that there have been many replies since mine and one user who complained that no one has answered.

As for the problem that I originally posted, I do have some updates for may condition at least. The condition that I have is writer’s tremor or what I have termed from blogs like this “right-hand focal dystonia,” though this may be a misnomer (I’m not a physician). I eventually saw a neurologist since the situation has gotten progressively worse. The neurologist prescribed a drug called primidone. To my euphoria, the drug worked to control the tremor; however, I found that for me at least the bad side-effects outweighed the benefits. I didn’t correlate the effects with the drug initially, but I found that I was extremely fatigued during the day. My daughter is a pharmacist and she confirmed that it likely was the result of the primidone, and she suggested that I cut back on the dosage. Instead, I stopped using the drug entirely. My energy level quickly returned and I haven’t resumed the medication. Just knowing that it could be controlled is mentally assuring and I will resume the primidone if alleviating the problem becomes more beneficial to me than enduring the side effects.

Other comments on my condition. It is similar to many of the comments that I have read on this blog, but there are significant differences from some. First, I have no hand-cramping and have no identifiable problems other than penmanship. When I try to draw a horizontal line it may start straight but soon becomes jagged as the tremor manifests itself. Frequently it is jagged beginning to end. I can write poorly with my left hand but without tremor. Some here have reported problems using a computer mouse. The only problem here is if I try VERY fine control. Navigating the mouse for most computer activity is no problem at all. Next, and I reluctantly include this since it probably is not relevant, but I play guitar poorly. I only bring this up since there are several professional musicians who have commented here and my Internet search returned a strong correlation of RHFD with professional musicians. I used to play daily for my own entertainment/enjoyment when I was younger and did not have the penmanship malady. My playing became less frequent about 20 years ago (maybe monthly now)and my writing tremor began about 10 years ago. My unprofessional assumption is that there is no correlation. But I did notice throughout my term of playing guitar that my left hand would cramp if I barred chords for too long (guitarists will know what I’m talking about). My style was finger-picking and I never had problems with that, which involves the right (tremor) hand.

I also have found that the problem is exacerbated by caffeine and alleviated by alcohol. This is only an observation and of course not a recommendation, but it may have helped the neurologist identify my condition. For me personally, I haven’t changed my consumption of either. I’m probably addicted to caffeine and do not plan to increase my very moderate alcohol consumption. If I make any changes at all, I’ll try reducing the caffeine, and then resume the primidone if necessary. Again, for me at least, I prefer to know what does/doesn’t work and then make my choices. It is comforting, though, to finally have an accurate diagnosis and available treatment.

laurie bowling's picture

dystonia - primidone

I recently read your post and wanted to share that I too have dystonia. I have all the same symptoms however it effects my neck, arm and right hand. I was diagnosed with cervical dystonia at 45 and that is only half the problem. I was a massage therapist for 14 years, treating several peoople a day. I went into it for self help when I was misdiagnosed by an MD quack that stated my neck tremors were from alcohol and I didn't drink. At 25, this was a choice because even though the alcohol lessons the tremors and spasms temporarily, the following day my tremors were much worse. Deleting or reducing caffeine and sugar has helped the most. I have found that by eliminating these items for the most part, my tremors in my body are improved and my spasms are lessened and less frequent. Some days are better than others and certain daily movements are a chore at times; such as, eating soup (or anything with a spoon), my hand writing (thank goodness for computers and pads these days). I too tried Primidone. Essentially, I thought more would be better, over zealous after waiting so long for some help, took a whole pill (caused severe head pain & took a few days to recover). I'm sure everyone is different but I started at 1/4 pill and after a week tried a 1/2 pill (also, I took at night before I went to bed so the initial side effects occurred during my sleep). I finally after a month moved up to 3/4 pill and my tremors and spasms and side effects worsened. I continued on 1/2 a pill for a couple of months and worked in 3/4 again and tried to stick it out, but eventually after a couple weeks went back to a 1/2. Keep in mind, I never took medication (not even an aspirin) so my side effects from medication are probably more sensitive. Bottom line is it never got better and I stopped paying for the medication and the doctor visit's to continue the meds after a year. I recently had to contact the doctor because my typing skills in my right hand (office manager) are deteriating and my right hand can't keep up with my left hand anymore. I learned how to eat with my left hand and use my left arm for any movements that are hindered. I practice meditation, relaxation skills, keep alcohol, medications, caffeine, and sugar at a minimum and I feel this has helped the most. The person I worked for went out of business and I recently wrote my physician for a disability letter for a typing job because of my typing skills decline and he declined me; saying that I was diagnosed with cervical dystonia and that typing skills were not included in my diagnosis and I would have to be rediagnosed. Unfortunately, that job came and went and I'm in the process of trying to reinvent myself again. During these economical times, every penny I keep is important. However, I will be watching this to see if any cures come available. LB

admin's picture

Thanks

Thanks for your observation re not receiving emails. We recently changed software configuration which allowed us to kickstart the emails. Hope hearing about other people's experiences will be interesting and helpful to everyone.

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