43. Conclusion

Common Ground with Other Disorders

A. Context

There is speculation that if a breakthrough discovery is found for  any movement disorder or brain condition that affect muscles, there may be a crossover to help with all of them

Though each of the following conditions  has unique features, there are some instances where they have common ground with dystonia. Not all patients have all the listed symptoms but the mechanism involved in each may merit study for how it is like the other named conditions.

Tremor for instance has been studied intensely and the type of tremor is slightly different for Parkinson’s than for dystonia.  In Parkinson’s the tremor tends to happen only at rest and disappears when the person moves. With dystonia tremor happens also during motion and particularly after motion.

B. Categories of disorders

movement disorders  (seem linked to basal ganglia and cerebellum)

            a. hypokinetic – less voluntary movement eg. Parkinson’s Disease

                        progressive supranuclear palsy, multiple system atrophy

            b. hyperkinetic – excess involuntary movements – Huntington’s disease

motor neuron disorders –  eg. amyotrophic sclerosis

            a. upper – weakness, increase in muscle tone, hyperreflexia

            b. lower – weakness, loss of reflexes, less muscle tone, fasciculations,

                        muscular atrophy

In those categories it seems that dystonia is often hyperkinetic However since patients some report delays and freezing there seems to also be some hypokinetic elements.

Muscle tone is continuous partial contraction of muscles. In the general population there is a kind of resting state to be ready for action, somewhat resisting passive stretching. It is near continuous ‘innervation’. that involves both the extensor and flexor muscles.   In ads for fitness centres a person is urged to tone up their muscles and one might assume that the higher tone, the better. However it turns out that muscle tone is not the same as fitness.  Ideal ‘tone’ is in the middle and it is possible to be too high or too low in terms of the technical primed partial contraction state.

a. low muscle tone – floppy, deadweight, lax, tends to have less strength and be more

            flexible, less able to do explosive movement like sprints or high jumps

            A child with low muscle tone feels heavy to pick up

            Hypotonia is very low muscle tone -muscles seem flaccid, limbs floppy,

            and the body resists passive movement less. It is often seen in

            lower motor neuron disease like poliomyelitis. Dystonia does not seem to be that.

b. high muscle tone  -tight, less flexible, stronger, not as able to do flexiblity actions

            like yoga or dance.. A child with high muscle tone does not feel as heavy

            to pick up, which suggests their body is naturally supporting their weight more


            Hypertonia is very high muscle tone. It is seen in upper motor neuron disease.

            It may appear as:

            a. spasticity -passively moving an elbow may not increase muscle tone                                          predictably but may depend on how fast the elbow is moved

            b. rigidity  –  passively moving an elbow is resisted, and tone is high

                        in more predictable pattern regardless of how fast you move the elbow

                        Rigidity can be of two types:

                        a. lead pipe  resistance to passive movement is continual

                        b. cogwheel resistance to passive movement is in jerks

It may be useful to study what aspects of dystonia are related to these categories of low and high muscle tone.

C. Specific other conditions and similarities to dystonia

In this list, items that seem similar to dystonia are listed. The differences may be useful to study, along with the similarities.

ALS – Lou Gehrig’s

            tongue muscle problems, slurred speech

            loss of muscle strength – legs buckle

            muscle twitches, especially upper body      

            damaged nerve cells lead to trouble walking, lack of coordination

            frequent falls, trips

            muscle cramps especially arm, shoulders

            loss of muscle control for hand, arms- to grasp, hold, carry

            jaw muscle problems chewing food

cerebral palsy

            cannot hold head up

            muscles spasms

            muscle stiffness, rigidity

            swallowing difficulties

            unusual posture, prefers one side

            exaggerated reflexes


            lack of balance

            drag leg when crawling

            walks on toes

            crouched gait

            scissors gait with knees crossing

            wide gait, asymmetrical gait

            hand motor problems to pick up items, button shirt

multiple sclerosis          


            movement and coordination problems

            numbness in face, body, arms, legs


            involuntary muscle spasms especially legs

            stiffness of muscles

            squeezing sensation around torso like blood pressure cuff


            loss of balance, dizziness

            weakness is unused muscles

            blurred vision, poor color vision, pain on eye movement

            swallowing problems

            lower volume speech

            tremor, shaking

Parkinson’s disease

            stiffness, rigidity

            slow walking, slow voluntary movement

            less arm sway as walk

            less blinking

            rhythmic involuntary tremor at rest ( for dystonia it is also when moving)

            tremor disappears when person moves (not quite the same for dystonia)

            dry eyes, double vision

            coke, cough, problems swallowing

            excess perspiration

            shaking but in one hand only


            trouble falling asleep or staying asleep

            restless legs but discomfort less if you move

            soft monotone voice, slurred words

Patients with Parkinson’s report a particularly interesting phenomenon

sometimes as they decide to move and then try to move. They


            a. balance – People with Parkinson’s have reported that

                        they can’t stand long without wobbling and that

                        they tend to fall.  Patients with dystonia also report

                        both problems. It would be useful to study what

                        aspects of balance are involved, whether the ear is registering

                        balance normally, and where there is dizziness or a vision

                        problem associated with dystonia/

            b-lack of control of motion- Patients with Parkinson’s disease

                        report that they feel like a steel ball in a pinball game,

                        fired to the hole but trying not to light up buttons on the way

                        It seems that people with dystonia have more control over

                        their motions but that could be studied.

            c.unable to multiregister what is going on. Patients with Parkinson’s

                        disease report that they can’t walk and carry a celphone at the same time                                 though they can do one or the other separately..

                        Some say they can’t know at the same time both their position

                        and his velocity. Some find they can’t gauge their speed while

                        they are moving and yet can’t stop until they find a safe position

                        and they  can’t find a safe position while moving.

                        It seems that with dystonia the ability to multi register is not as impaired.

                        This could be studied.

            d. freezing in place while trying to move. People

                        with Parkinson’s disease have reported that when surprised as they

                        try to walk, they may freeze and be unable to move,

                        as if ‘spinning their wheels’.  Though people with dystonia report

                        delay in moving as desired, the inability to move at all and freezing

                        is less often reported. Yet the similarities could be studied.

                        People with Parkinson’s sometimes report their faces becoming frozen and

                        expressionless. People with dystonia report a milder version of this,

                        some having a fixed grimace that is hard to move out of.

                        The similarities could be studied.

            e. unintentional movements, random jerks of motion

                        People with dystonia sometimes report random motions but

                        not all do.


            difficulty regulating voice- may be too soft or flat, monotone

            -motion seems to comfort, possibly to reduce pain? so they rock, spin

            -self injury like bang head on wall, bite hands, rub skin -due to pain?

            -disorganized sensory perception

            -withdrawal  from being touched- possibly due to

            -use of fingers not hand to manipulate some objects

            -hyposensitivith  to pain or hypersensitivity- as if not registering it correctly

            -message from touching to brain is overactive

            -problem detecting head position or fact of movement- semicircular canals

                        in ears are not functionning accurately

            -trouble walking on uneven surfaces

            -problems with sensing motion accurately going up or down   

                        stairs or hills

            -comfort from some repeated motions, jumping, spinning

            -odd body positions

            -difficulty automatically adjusting body position for balance stepping

                        off curb (proprioception)

            -difficulty planning a motion then doing it ( praxis)

            -muscle cramps, neck or back pan,jaw pain

            -muscle tightness

            -restless legs

            -chest tightness as if can’t quite take in a full breath


            -difficulty swallowing

            -problem with eye unable to adjust to bright headlights

            -cold hands or feet

            -sensitivity to loud noise – stapedius muscle is tense


            -zaps of peculiar sensations, seeming electric

            -neuromuscular irritability

            serotonin level not as high at night as it should be

            Some of these features of autism may merit study for their similarities to dystonia.

            The rocking for comfort may be similar to the 45 second trick to escape pain

            and sensitivity to touch may be similar to the sensory trick mechanism of             dystonia.

essential tremor

            shaking in both hands

            worse if tired, stressed, using caffeine

            The ways dystonic tremor is like essential tremor may be useful to study.


            sudden numbness – face, arm leg

            sudden muscle weakness- face, arm, leg

            sudden trouble with vision in one or both eyes

            sudden trouble with balance , walking

            sudden trouble speaking\

            The ways that stroke is from a sudden crisis in circulation may bear some             resemblance to effect of dystonia and merits study.

Meniere’s disease

            dizziness – rotational vertigo

            fast fall, ‘drop attack”


            sensitivity to sound (though it causes ear pain not just jump)

            The types of dizziness may be useful to study, and the perception

            of balance similar to and different from dystonia.

drug treatments

            Studies that examine effects of medications continue to be important in the study    of dystonia. Some anti psychotics have been clearly linked to development of

            dystonia and other drug categories have also been implicated.

restless leg

            -leg or foot throb, itch, zap, crawling, creeping feeling – unpleasant     

            -relieved by movement – stretch, jiggle, pace, walk

            -can be twitching or leg kicks

            -unpleasant feeling that is a huge urge to move legs like an urge to yawn

            -the feeling is described as unpleasant, tingling, crawling

            -it is somewhat alleviated by movement

            -often the movement has to be intense like walking

            -it is possible to not have to get up and walk if a person can do continuous motion

            up and down (45 second rule?)

            -it happens in several movement disorders including Parkinson’s

            -it happens in 2.5% -15% of general population at some point

            -it seems triggered by antidepressants, antipyschotics, and calcium channel


            -it may be related to changes in neurotransmitter dopamine

            -it may be related to iron deficiency

            The similarities between restless leg  mental urge to move

            and dystonia message merit study.


            loss of balance, loss of coordination, sway, stagger

            can’t sit straight

            problem standing up

            falling down

            lack of eye focus

            excess sweat

            delayed reaction time

            droopy eyelids

            twitches, body tremor

            thick slurred speech

            The effect of alcohol on dystonia seems complex but may merit study.

            Some forms of dyskinesia have been found to develop during alcohol withdrawal.

            Some forms of dystonia seem reduced in intensity with alcohol. 


            the brain is able to direct motion without the person being awake

            With dystonia when movements are not suppressed during sleep

            this may have some similarities to sleepwalking.

 drug withdrawal

            frequent yawning

            excessive sweat

            muscle cramps, aches

            (fluctuation in brain chemicals)

aging muscles


            creaking of muscles or bones on movement

            slowed movement, slowed response time, greater pain

            The differences between slowed motion due to age

            and slowed motion due to dystonia may be useful to study.\

            In some patients both factors may be at work.


            some seizures are conscious

            frontal lobe seizure may lead to stiffness twitching

            parietal lobe seizure may lead to numbness, tingling

            occipital lobe seizure may be visual with lights flashing

            Since patients with dystonia sometimes report numbness,

            tingliong, lights flashing and twitching, similarities and

            differences between dystonia and epilepsy may be useful to study

dying  – cell death

            early stages after death involve some involuntary movement

            weakening of muscles

            blood circulation lessens

            respiration slows. is shallow and is in pauses and gasps

            pain is reported

            eyelids become partly shut

            eyes become fixed

            as rigor sets in- stiffness

            rigor mortis

            ATP level in muscles goes to zero

            lactic and typyruric acid build up

            glycogen is depleted

            calcium leaks

            muscles start to stiffen first with small muscles, then larger ones

            muscle shortens length

            mouth stays open

            face stiffens and appears to be in grimace

            stiffening happens first in hands and feet 3-4 hours post death       

            stiffening goes to all body 12 hours post death

            stiffening reduces and body is flaccid completely at 36 hr post death

            the rate of rigor mortis is faster at high air temperature and lower at cold

            The dystonic muscle seems both overengaged by the brain and also     

            unresponsive or less responsive to instruction to move.  The differences

            between that and cell death may be useful to study.

D. Specific symptoms common ground with normal and with other medical conditions

Some of what people experience in dystonia seems an exaggeration of what happens in the normal population. It might be interesting to see what is the mechanism of the normal activity to see if dystonia has more involvement logically.

mouth open

            normal when shocked, staring, surprised

            not normal if can’t close mouth well – locked jaw, possibly infection

            mouth breathing  when nose plugged, allergies, lack of oxygen, stress

head tilt

            weaker muscle on one side from birth

            weaker muscle on one side from habitual posture

            thoughtful, quizzical gesture

jerky motion, delays

            great discomfort, effort, pain



            scrunch up eyes -allergies, light too bright,

            (people with dystonia often squint when trying to do painful motion)

            eyes not look same direction – lazy eye, muscle weakness on one side


            -room spin – vertigo

            -heavy headedness, loss of balance, problems walking

            -lightheadedness, feeling like floating

            -can be low iron, dehydration , carbon monoxide poisoning

            -can be low blood sugar, infection, ear or vision problems

clicks- finger popping, creaks- aging

            air trapped, nitrogen bubble- knuckle crack sound

            feels good after as muscle relaxes

            tendon moving to new position eg, knees, ankles

            loss of cartilage as we age

            repetitive use -bend arm or leg, muscle rubs on bone

            shoulder many  noises because large range of motion

indirect angle of motion of head to see something when in pain

            crick in neck

            pain in some positions so natural avoidance of them

            slept or sat in awkward position


            out of focus- tired

            muscles not coordinated weak, damaged


            – press on finger too long (sensory overuse may be responsible)

foot fall asleep

            numbness ( lack of motion/ prolonged time in one position may

            be responsible)

balance adjustment overcorrect

             – toddler walking  (feedback between motor and sensory being adjusted)

muscle tightness , stiff

             too much exercise

            not enough exercise

lumps, knots in muscles

            can be felt by the fingers

            may hurt only there – tender point

            may lead to pain to nearby muscles – trigger point

            in calf, lower back, neck, shin, shoulder

            caused by repetitive exercise, lifting

            caused by prolonged sitting or bed rest, not enough exercise, poor posture

            helped by heat, ice, stretching, sleep, gentle exercise

pressure to ease pain-

             skin touch,  acupuncture points

sensory trick- finger to forehead

            thought, concentrate, cancel distraction

sensory trick – finger on cheek

              thought, comfort

sensory trick – finger at temple

            thought, idea

sensory trick – chin rest on hand

            portrait pose,  thoughtful

sensory trick – hand on hip

             confidence, self-comfort

sens trick – close eyes

            thoughtful, relaxed

sensory trick – hand at back of head

            relaxed, confident

licking lips

            dry  lips


tongue to one sid

             thoughtful, concentration

The nature of dystonia to exaggerate some of these normal motions may provide useful research about the fine differences.

E. Commonalities with progression of symptoms

Many medical conditions progress. A headcold tends to move through the body  in the pattern of fatigue, headache, sore throat, nasal congestion, sinus and ear pressure mounting, coughing and then recovery.  The flu tends to move through the system with stomach ache, nausea, dizziness, fatigue, vomiting, diarrhea, exhaustion, specific food cravings, then recovery Bacterial infections tend to spread if unchecked, from the affected area to adjacent ones.

Gangrene tends to spread from the affected area where blood supply was cut off to other  areas adjacent which is a bit odder to consider since it is as if cell death ‘spreads’ but what may be going on is likely the challenge of less and less blood coming to each area.

Cancer also tends to spread. It attacks one area and if unchecked can break out of that area and spread  physically to nearby tissue, and it may get into the blood stream or the lymphatic system and spread to other organs of the body. The spread of dystonia may be useful to compare.

It seems like the body can handle some invaders such as viruses but often needs help with others.  The nature of the invader perceived as an object travelling through, like a virus is easy to visualize/The idea of a injury and an infection that spreads due to bacteria moving to nearby areas is also easy to understand. The idea of an invader that gets into the blood or lymph  and may attack anywhere is less easy to visualize. Similarly with dystonia the logic of where it spreads to does not always seem clear.

It is harder to visualize what is going on in an auto-immune disease. With diabetes the area affected is the pancreas, specifically the islet cells. Lack of insulin or ability to use it affects all other cells.  Dystonia does not seem however to affect all cells

An auto immune disease is harder to visualize, given the current hypothesis that the body body is mistakenly attacking itself as if there is an invader. The possibility there is an invader that medicine so far cannot see is interesting to consider. Patients with dystonia often express confusion about whether the dystonia is an invader attacking them or a dysfunction of the system from within.

A recent hypothesis that Alzheimer’s is an autoimmune disease is interesting. When the plaques and tangles in the brain are seen as not the cause but just the evidence of damage, and when removing the plaques does not fix the problem the problem seems to not just an invader  travelling through the system  and hitting various areas..

With movement disorders that start at some point and then progress, affecting other parts of the body, there is also mystery of why there is progression and to where and how fast.

With Lou Gehrig’s disease the  progression is often muscle stiffness or weakness, then gradual wasting, paralysis of some muscles and limbs and eventual involvement of speech, swallowing and breathing  With Lou Gehrig’s there is rarely remission and the progression is often with 1-2 years though for some people it is slower.

Parkinson’s disease moves through stages also. It typically starts with tremor and affects movement on one side of the body only. Then it moves to both sides, there is more rigidity, it gets more difficult\ to do daily tasks. There is more loss of balance, movements get slower, there are more falls. At later stages a walker or wheelchair is needed and it becomes difficult to stand or walk at all. At final stages a person may even have delirium.

The stages of any medical condition suggest that the body is trying to fight and has limited success.  The nature of what the body tries to do may be important in the hope medical care can assist it.

 F. Attacks, bouts and remission

Patients with several types of medical conditions report having attacks or bouts when the condition is worse. Some patients with dystonia also report attacks –  dystonic storms.

With migraines

            -first phase prodrome is 1-2 days ahead, constipation, mood change,  

            food cravings, neck stiffness, increased thirst, yawning

            -aura phase – vision loss of vision phenomena seeing shapes or lights oddly,

            pins and needles sensation, weakness, numbness, hearing strange noises,

            uncontrollable jerking, difficulty speaking

            -attack – throbbing pulsing pain on one or both sides, nausea, vomiting

            sensitivity to light, sound, sometimes to taste and touch

            -post drone- exhaustion, confusion, elation

With epilepsy

            There are many types of brain seizures but some involve

            -petit mal or absence seizures – stare into space, eye blinking,

                        lip smacking

            -tonic- stiffening of muscles in back, arms, legs with possible falling

            -atonic – loss of muscle control, with sudden collapse and fall

            -clonic – rhythmic repeated muscle jerking of neck, face, arms

            -myoclonic  -brief sudden jerks or twitches in arms and legs

            -tonic- clonic / grand mal – abrupt loss of consciosuness, body   

            stiffening, shaking, sometimes biting of tongue and loss of bladder


With diabetic attack

            low blood sugar – confusion, dizziness,  nausea, hunger, shakiness

                        sweating, chills, rapid heartbeat, weakness, fatigue, tingling

                        mouth, headache, seizure

            high blood sugar – thirst, frequent urination, headaches, blurred vision


            ketoacidosis – thirst, dry mouth, frequent urination, dry skin, fatigue,    

                        nausea, difficulty focusing, confusion, fruity breath


            Some conditions go into remission or a honeymoon period.

            It has been observed in cancer, in diabetes and occasionally in

            dystonia. Study of these intervals may provide very useful information

            about what the body is doing to eliminate the problem.

G. Conclusion

Study of the body and mind, the  messaging, the body’s immune system and its efforts to cope with and work around challenges, may have many crossovers.  Study of dystonia has potential to provide information relevant to many  other conditions and to understanding the body better itself.