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
easily
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
spasticity
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
fatigue
movement and coordination problems
numbness in face, body, arms, legs
tingling
involuntary muscle spasms especially legs
stiffness of muscles
squeezing sensation around torso like blood pressure cuff
spasticity
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
pain
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
report
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.
autism
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
-tics
-difficulty swallowing
-problem with eye unable to adjust to bright headlights
-cold hands or feet
-sensitivity to loud noise – stapedius muscle is tense
-numbness
-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.
stroke-
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”
sweating
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
blockers
-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.
inebriation
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.
sleepwalking
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
pains
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.
epilepsy
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
fatigue
squinting
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
dizziness
-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
eyes
out of focus- tired
muscles not coordinated weak, damaged
numbness
– 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
thoughtfulness
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
control
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
fatigue
ketoacidosis – thirst, dry mouth, frequent urination, dry skin, fatigue,
nausea, difficulty focusing, confusion, fruity breath
Remissions
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.
Lived Experience With Dystonia 