This site gives no medical advice or endorsement. However it might be useful to run through some medical terms used related to dystonia to help us all understand the jargon.
Here is what I have learned from searches in medical dictionaries, dictionaries and textbooks. I am not a doctor. For more details of course consult your own doctor.
General medical terms
ambulatory patient can walk in and walk out of treatment area
atrophy in muscles is wasting of muscles due to loss of tissue
causal acting as a cause
chronic persisting for a long time, constantly recurring
clinic place for treatment of nonresident patients, for outpatients
curative serving to cure or heal, treatment that remedies
discharged officially allowed to leave a hospital
disease illness caused by infection or health problem not by injury or accident
disorder a disruption to regular body structure and function
dystrophy in muscles is weakness that reduces mobility
efficacy ability to produce desired result
etiology cause
exogenous caused by factors from outside the organism
idiopathic from obscure or unknown cause
indicators observable changes, health details
local restricted to one spot
neural related to nerves and nervous system
palliative care in serious illness to relieve symptoms and stress
refractory does not respond well to current treatment
remission decrease or disappearance of signs or symptoms
signs objective evidence others can observe – eg. rash, lump
symptoms subjective reports only patient can give- eg. pain, fatigue
syndrome collection of signs and symptoms with specific health cause
systemic affecting the entire body
toxicity degree of being poisonous or harmful
virulent extremely toxic or harmful
Symptoms
acquired not inherited or present at birth
akinesia loss or impairment of voluntary movement
apraxis motor disorder with difficulty planning to perform tasks
ataxia disease of the nervous system
atheotosis abnormal muscle contractions, involuntary writhing
atrophy reduction in size of cell, organ or tissue
axial in central part of body, head and trunk not limbs
ballismus disorder with muscle weakness, involuntary and uncoordinated movement
benign not harmful, cannot spread to other cells, not cancer
blinking closing and opening eyes rapidly, mostly involuntary
bradykinesia slowness of movement
chorea irregular, unpredictable movements
congenital present at birth
contract to shorten, reduce in size, muscle has more tension
contracture more permanent tightening and stiffening of muscle tendons, skin
distal muscle farther away from the centre of the body
dorsal on the back
dysarthria speech disorder where muscles are damaged or weakened
dysphagia difficulty swallowing
extension straightening- increases angle between two bones
flexion flexing- bending, decreases angle between two bones
hemorrhage escape of blood from a ruptured blood vessel
hoarseness abnormal voice changes -eg, breathy, raspy, change in pitch or loudness
hyper high, above normal
hyperkinetic excessive abnormal involuntary movements
hypertonia too much muscle tone -eg arms, legs stiff and difficult to move
hypo lower than normal
hypokinetic partial or complete loss of muscle movement
hypotonia muscle weakness, decreased muscle tone
kinesigenic involuntary body movements triggered by voluntary muscle activity
malignant having cancerous cells that are growing
myoclonus quick involuntary muscle jerks – eg hiccups
myopathy disease affecting muscles and voluntary movement
nausea urge to vomit, stomach queasiness
osteoarthritis inflammation, breakdown, loss of cartilage in joints
osteoporosis thinning of bones, reduced bone mass
paralysis loss of motor function of a muscle, sometimes loss of sensation
paresis weakness of muscle movement, still has some control
paroxysmal suddenly acute, worsening symptoms
peripheral away from the centre of the body
plegia paralysis or stroke in part of the body, loss of voluntary movement there
proximal closer to the centre of the body
rigidity stiffness, inflexibility, muscle can’t relax. sometimes less range of motion
sensory taking nerve impulses to central nervous system from eyes, ears, nose etc
spasm sudden involuntary contraction of muscle
spasmodic having sudden involuntary muscle contractions
spastic muscles stiffen or tighten, remain contracted, can’t move fluidly
sporadic occurring at irregular intervals, scattered, isolated
superficial on the surface, shallow, not deep
tardive late in appearing, does not happen immediately
tone in muscles, ability to hold posture – partially contract, resist stretch
torsion twisting- one part tends to turn and the other is still or pulls the other way
tremor involuntary rhythmic muscle contraction leading to shaking
ventral abdominal
Types of specialists dealing with dystonia
endocrinologist doctor who treats hormonal imbalances
ENT surgeon ear, nose and throat surgeon
epidemiologist doctor who studies patterns of disease and injury in the population
layngologist doctor who treats disorders of larynx or voice box
neurologist doctor who treats disease of brain, spinal cord, nerves, muscles
neuropsychologist doctor who treats nervous disorders and how people feel, think, act
neurosurgeon doctor treating brain, spine or nervous system often by surgery
occupational therapist person who helps the injured or ill with skills for daily tasks
ophthamologist doctor who treats eye disease, performs surgery, prescribes glasses
orthopedist doctor who treats bones, joints, ligaments, tendons, muscles
osteopath doctor who treats the whole person not just a disease
pathologist doctor studying blood. fluids, tissues, cause and nature of disease
pharmacist person who dispenses medication and advises about use
pharmacologist researcher of chemical process who creates and tests new medicine
physical therapist person helping people with physical challenges exercise and cope
psychiatrist doctor treating people with emotional, mental behavioral problems
psychologist person who studies mental processes and human behavior
psychopharmacologist researcher studying substances affecting mood, thought, behavior
recreational therapist person working with people to enable meaningful leisure
social worker person helpsothers develop skills to handle difficult life situations
speech language pathologist studies science of speech and helps treat problems with it
Clinical exam these are some measurements that might be used
Primary depression scale PDS
Purdue anxiety index
Toronto Western Spasmodic Torticollis Rating Scale TWSTRS
Unified Dystonia Rating Scale UDRS
Brain aspects studied
acetylcholine neurotransmitter to contract muscles, slow heart, increases body secretions
dopamine brain hormone, neurotransmitter involved in pleasure and motor control
endorphins body chemicals that relieve stress and pain
epinephrine adrenaline, in emergency constricts blood vessels, helps breathe
excitatory causes action- eg. when released it causes muscles to contract
GABA neurotransmitter to block impulses between nerve cells in brain
glutamine amino acid made in muscles that helps immune system and healing
inhibitory keeps some things from happening, reduces or blocks action
neurotransmitter message carrier from nerve cell to muscle, nerve or gland
norepinephrine stress hormone released into the blood
serotonin chemical between nerve cells. mood stabilizer, helps digestion
Tests – imaging
brain map using information about the brain to make a map of the brain
CAT scan computed axial tomography- X rays make 2D or 3D image of body part
CT scan computed tomography- X rays make 2D or 3D image of body part
EEG electroencephalogram – test of electrical activity in the brain
EMG electromyographic analysis -measures muscle and nerve cell activity
MRI magnetic resonance imaging -uses magnets & radio waves to study organs
PET positron emission tomography scan- studies tissue and organ function
tomography uses waves to make images of sections of the body
ultrasound uses high frequency sound waves to make images of the body
x-ray electromagnetic wave is used to make image of inside of body
Treatments – injections
what is injected
cortisone steroid to relieve pain and inflammation
botulinum toxin blocks nerve activity in muscles temporarily
nerve block injection near nerve to prevent or control pain
steroid compound reducing swelling, may reduce immune system activity
types of botulinum toxin
(there are types A-G but only A & B are often used in medicine)
botulinum neurotoxin powerful toxic protein that can in small doses treat muscle spasms
botulinum toxin type A
botulinum toxin type B
trademark names of botulinum toxin:
Botox TM onabotulinumtoxinA – 1995
Dysport TM Azzalure TM abobotulinumtoxinA 2016
Myobloc TM rimabotulinumtoxinB -2000
Xeomin/TM BocoutureTM -incobotulinumtoxinA 2009
Jeuveau TM prabotulinumtxoinA -2019
where is injected
cervical neck
epidural at any level of spine- eg. neck, mid back, lower back
intramuscular within a muscle
lumbar lower back
sacral tailbone
subcutaneous under the skin
thoracic mid back
Treatments – pills
acetaminophen an analgesic to treat pain
agonist activates production of a substance
analgesic pain reliever
antagonist suppresses production of a substance
anti nausea prevents or eases nausea or vomiting
anti-anxiety may block some chemical production, reduces anxiety
antibiotic inhibits growth of or destroys microorganisms
antidepressant balances brain neurotransmitters to affect mood and emotion
antihistamine relieves symptoms of allergies or reaction to insect bites
antihypertensive used to lower blood pressure
antipsychotic mood stabilizer, relieving symptoms of delusion, hallucination
antispasmodic relieves muscle spasms
atypical not usual
baclofen muscle relaxer for pain, spasms, stiffness
benzodiazepine sedative or tranquilizer to slow body functions
cannabinoid compound found in cannabis
narcotic addictive drug reducing pain, altering mood
neuroleptic reduces nerve tension and nerve function
NSAID nonsteroidal anti-inflammatory drugs
opioid often addictive drug to relax body, relieve pain
Treatments – stimulation
DBS deep brain stimulation implants electrodes in brain to affect function
ECT electroconvulsive therapy- electric current in brain to change chemistry
TENS transcutaneous electrical nerve stimulation – low current, on skin, for pain
TMS transcranial magnetic stimulation – magnetic field stimulates brain cells
Some (sort of funny) areas of possible confusion for nonmedical people like myself
acute does not mean ‘a cute’ but serious
admitting does not mean confessing, but allowed in
Botox® is not a name for all injections . It is a brand name
certified does not mean the slang use of crazy but having a certificate
cervical is not about the cervix womb but about the neck
comorbidity two or more medical problems at once (not buddy for gruesomeness)
DBS is not short for dibs, having first pick at the cake or seating
discharged does not mean the gun shot off, but allowed to leave hospital
essential tremor does mean you must get some
executive function does not mean what the boss does
expression of a gene does not mean its gestures and mood
imaging is not about attractiveness or street cred
inhibition does not mean shyness
IV is not a person
lab is not a dog and may not be a place producing chemicals
locomotion is not about a train, but ability to move from one place to another
medical may be about pills not about health treatment
mobility does not mean getting a job promotion or a new house
morbidity does not mean macabre or deadly but amount of suffering
muscle tone is not about music or skin color
nuclear is not the bomb
radiology is not about radios
registered does not mean checked in
sensation does not mean awesome, but hearing, tasting, smelling
systemic does not mean planned well, systematic, but spread through the system
(We patients enter this medical world like tourists. There may be a special time zone in the world called ‘hospital time’ where everything slows down…But they’re trying. Maybe that is why it is called ‘medical practice’ Gotta love em. ..Sigh)
Lived Experience With Dystonia 