Myasthenia terms to remember! - General Questions and Topics

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General Questions and Topics

Myasthenia terms to remember!

Posted by Ashley on April 13, 2022 at 10:01 am

Good morning all!

How is everyone doing?

I am posting some helpful tips that were posted on the LEMS group on facebook, because I know not all of our members here read the posts there.

It is a patient support document for myasthenics to explain the terms and conditions of a myasthenic crisis. This was written by Sally O’Meara, a nurse living with myasthenia.

Special thanks to @dawn-debois and Julianna for posting in both facebook groups.

“IMPORTANT TERMS TO KNOW – MYASTHENIC CRISIS

PATIENT SUPPORT

Patient advocate = an individual or group that assists patients by giving voice to concerns, helping resolve issues with insurance and healthcare providers, and ensuring that the patient’s wishes are respected.

ICE = acronym for In Case of Emergency

Living will = a written statement specifying the treatment plan to be followed by healthcare providers when the patient is unable to communicate. This usually includes CPR, tube feeding, and other types of interventions provided at the end of life. Also known as an Advanced Directive.

Medical guardian = A person who is authorized to make healthcare decisions for a patient who is unable to do so.

Hospital advocate = Hospital employee who addresses problems and voices concerns about care provided in the facility. Also known as a Patient advocate.

Medical durable power of attorney = Legal document naming a person or persons to make healthcare decisions for the patient when the patient is unable to do so. It also provides instructions about the type of medical care the patient wishes to receive. Also known as a Health Care Proxy.

Resuscitation = treatment to revive a patient when the breathing has stopped and/or the heart has stopped beating.

GENERAL

Respiratory failure = dangerous state in which the lungs are unable to pass enough oxygen into the blood and/or the lungs are unable to remove enough carbon dioxide from the blood. This can happen to MG patients when the respiratory muscles are too weak to move enough air in and out of the lungs.

Cholinergic crisis = increased muscle weakness due to overdose of MG medication (mestinon/Pyridostigmine)

Myasthenic crisis = the respiratory muscles have become so weak due to worsening MG that a ventilator is needed to breathe for the patient. Crisis should not be confused with exacerbation, which is a general worsening of MG symptoms.

Exacerbation = worsening of symptoms

Conversion disorder = physical symptoms that occur without a physical disease to cause them. Instead, symptoms are caused by an ongoing mental health problem such as depression or anxiety

Respiratory arrest = absence of breathing because the lungs have failed

Refractory MG = MG that does not improve with standard treatment

SYMPTOMS

Diplopia = double vision

Ptosis = droopy eyelid

Dyspnea = shortness of breath

Orthopnea = difficulty breathing when lying flat in bed

Tachypnea = rapid breathing rate

Hypophonia = very quiet speech that is hard to hear

Dysarthria = slow, slurred speech that is hard to understand

Dysphagia = difficulty swallowing

Diaphoresis = breaking out into a sweat

Bulbar symptoms = weakness of the muscles in the neck and jaw making it hard to talk, chew, swallow and hold up the head. Bulbar weakness can lead to choking and aspiration

Aspiration = inhaling food, fluids or other substances into the lungs

HOME RESPIRATORY ASSESSMENT

Single breath count = the patient counts out loud after breathing in as deeply as possible. Patients with normal respiratory function can count to 50. A single breath count less than 15 indicates dangerously poor respiratory function.

Interrupted speech = pausing to take a breath after every few words, due to inability to inhale enough air to speak in complete sentences. Also known as staccato speech.

Use of accessory muscles = Muscles around the collarbone and neck are used to help move air in and out of the lungs when the diaphragm becomes very weak.

Paradoxical breathing = Weakness of the diaphragm leads to abnormal chest movements with the rib cage contracting inward as air is inhaled into the lungs,

HOSPITAL RESPIRATORY ASSESSMENT

Pulse oximeter = a small device used to measure blood oxygen levels

ABGs = Arterial Blood Gases. Used to measure oxygen and carbon dioxide levels in the blood.

Respiratory acidosis = poor respiratory function leads to too much carbon dioxide in the blood, which increases the acidity of the blood

Hypoxemia = not enough oxygen in the blood

Hypercarbia = too much carbon dioxide in the blood due to poor respiratory function Also known as hypercapnia.

Hypercapnia = too much carbon dioxide in the blood due to poor respiratory function Also known as hypercarbia.

PULMONARY FUNCTION TESTS

VC = Vital Capacity. Largest amount of air that a patient can exhale after inhaling as much air as possible.

FVC = Forced Vital Capacity. Largest amount of air that a patient can exhale as forcefully and quickly as possible after inhaling as much air as possible.

NIF = negative inspiratory force. Used to measure strength of respiratory muscles for inhaling air. Also known asMIP = Maximum Inspiratory Pressure.

MEF = Maximum Expiratory Force. Used to measure strength of respiratory muscles for exhaling air. Also known as MEP = Maximum Expiratory Pressure.

TREATMENTS

CPAP = Continuous Positive Airway Pressure. Breathing machine used by patients with sleep apnea to keep their airways when they are asleep. Continuous, steady air pressure is used to splint the airways and keep them open so the patient can breathe during sleep.

BiPAP = Bi-level Positive Airway Pressure. Breathing machine used by patients with MG when respiratory muscles become weak. BiPAP machines have two settings: a high air pressure is used to help the patient inhale and a lower air pressure is used to allow the patient to exhale easily.

Plasmapheresis = a procedure similar to dialysis in which blood is removed from the body and returned after disease-causing antibodies are carefully removed.

IVIG = Intravenous Immunoglobulin, a concentrated solution of antibodies given via IV to treat autoimmune diseases.

Cholinesterase inhibitor = medication that prevents the acetylcholine enzyme from being destroyed in the muscles. This helps relieve muscle weakness due to MG. Examples include: Pyridostigmine (Mestinon), Caffeine, Huperzine A, and Tensilon.

Mestinon = Primary cholinesterase inhibitor used in the treatment of MG. Also known as Pyridostigmine

Intubation = insertion of a breathing tube into the airway so that a ventilator can breathe for the patient

Mechanical ventilation = use of a breathing machine to breathe for a patient”

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