Diagnosis Myasthenia Gravis (MG) my-uhs-THEE-nee-uh GRAH-vis
A rare autoimmune neuromuscular disease where the immune system attacks the connection between nerves and muscles, causing weakness that worsens with activity and improves with rest.
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In plain words My body is sending friendly fire to the switch that tells my muscles to move — the more I use a muscle, the weaker it gets, until I rest it.
Diagnosis Generalized MG (gMG) jen-er-uh-LYZED
The form of MG affecting muscles throughout the body — face, throat, limbs, and breathing muscles — not just the eyes.
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In plain words This is the “it’s not staying in my eyes” version. It can show up anywhere from my eyelids to my lungs.
Diagnosis Ocular Myasthenia Gravis AH-kyoo-ler
A form of MG limited to the eye muscles, causing drooping eyelids and double vision without weakness elsewhere.
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In plain words Some people’s MG stays contained to their eyes only. Mine didn’t — but this is where a lot of MG stories start.
Diagnosis Seropositive SEER-oh-PAH-zuh-tiv
Having detectable MG-related antibodies, like AChR or MuSK, on a blood test.
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In plain words My blood test found the proof — the antibodies actually causing the trouble.
Diagnosis Seronegative SEER-oh-NEG-uh-tiv
Having MG symptoms without any of the known antibodies showing up on standard bloodwork.
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In plain words Some people have every symptom of MG but clean labs. It’s still real — just harder to prove on paper.
Diagnosis AChR Antibody uh-SEE-tul-KOH-leen receptor
The most common MG antibody; it blocks or damages the receptors muscles use to receive “move” signals from nerves.
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In plain words This is the specific troublemaker in my bloodwork — mine came back about 400 times higher than normal.
Diagnosis MuSK Antibody rhymes with “dusk”
A less common MG antibody (Muscle-Specific Kinase) associated with more bulbar — face, throat, breathing — symptoms.
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In plain words A different flavor of MG antibody. If this is yours instead of AChR, your symptoms and treatment plan might look a little different than mine.
Diagnosis LRP4 Antibody L-R-P-four
A rarer MG antibody found in some people who test negative for both AChR and MuSK.
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In plain words One more possible answer for people whose first two antibody tests come back negative.
Diagnosis Neuromuscular Junction (NMJ) NOOR-oh-MUS-kyoo-ler
The tiny gap where a nerve ending meets a muscle fiber and passes along the signal to contract.
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In plain words Think of it as a relay-race handoff between nerve and muscle. In MG, my immune system keeps knocking the baton out of the air.
Diagnosis Thymus Gland THY-mus
A small gland behind the breastbone, part of the immune system, often enlarged or abnormal in MG patients.
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In plain words A gland most people never think about — until it turns out to be part of why your immune system went rogue.
Diagnosis Thymoma thy-MOH-muh
A tumor of the thymus gland, benign or malignant, strongly linked to MG.
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In plain words The 5.2 cm mass they found on my chest CT before I even had symptoms — the thing that started this whole chapter.
Diagnosis Thymic Hyperplasia THY-mik hy-per-PLAY-zhuh
An enlarged but non-tumor thymus gland, also commonly linked to MG.
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In plain words The “it’s big but it’s not a tumor” version of what can happen to this gland.
Diagnosis Thymectomy thy-MEK-tuh-mee
Surgery to remove the thymus gland, sometimes done to treat MG or remove a thymoma.
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In plain words The surgery on my calendar — taking out the gland doctors think helped set all of this off.
Diagnosis Tensilon Test (Edrophonium Test) TEN-sih-lon / ed-roh-FOH-nee-um
A now-less-common test where a short-acting medication is injected to see if weakness briefly improves, supporting an MG diagnosis.
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In plain words A quick “watch and see” test — if a shot of medicine makes a droopy eye pop open for a few minutes, that’s a big clue.
Diagnosis Ice Pack Test
A bedside test where ice is applied to a drooping eyelid; improvement in the droop supports an MG diagnosis, since cold temporarily helps the neuromuscular junction work better.
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In plain words Genuinely just an ice pack on your eye — and if the droop gets better, it’s a real diagnostic clue, not just a spa moment.
Diagnosis Single-Fiber EMG (SFEMG)
A specialized nerve test measuring the timing between individual muscle fibers — one of the most sensitive tests for MG.
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In plain words A more detailed, more uncomfortable version of a nerve test. It’s very good at catching MG that other tests miss.
Diagnosis Repetitive Nerve Stimulation (RNS)
A nerve conduction test that repeatedly stimulates a nerve to see if the muscle response weakens — a hallmark of MG.
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In plain words They zap a nerve on repeat and watch whether your muscle tires out faster than it should.
Diagnosis Antibody Titer TY-ter
The measured concentration of a specific antibody in the blood, used to diagnose and monitor MG.
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In plain words The number on my lab report showing how much of the attacking antibody is floating around in my blood.
Diagnosis MGFA Classification
A staging system from the Myasthenia Gravis Foundation of America, categorizing severity from Class I (ocular only) to Class V (requiring a breathing tube).
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In plain words The scorecard doctors use to describe how serious someone’s MG is at a given point. Mine has moved through more than one class already.
Diagnosis MG-ADL Scale
A patient-reported questionnaire (MG Activities of Daily Living) scoring how MG affects everyday tasks like talking, chewing, breathing, and climbing stairs.
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In plain words A checklist where I rate my own bad days — it turns “I’m struggling” into something a doctor can actually track over time.
Diagnosis QMG Score
The Quantitative Myasthenia Gravis score, a clinician-administered exam measuring weakness through specific timed tasks.
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In plain words The in-office version of “how weak am I today,” done by a doctor watching me move.
Diagnosis Mediastinal CT mee-dee-uh-STY-nul
A CT scan of the chest area between the lungs, used to examine the thymus gland and check for a thymoma.
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In plain words The scan that found my thymic mass — a picture of the space right behind the breastbone.
Diagnosis Needle Biopsy
A procedure using a needle to remove a small tissue sample for testing, often to check if a mass is a tumor.
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In plain words The test that’s supposed to tell you what a mass actually is — though mine came back inconclusive, part of why surgery became the next step.
Treatments Pyridostigmine (Mestinon) peer-id-oh-STIG-meen / MESS-tih-non
A cholinesterase inhibitor and first-line MG medication; it helps nerve signals reach muscles by blocking the enzyme that breaks down acetylcholine.
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In plain words The everyday helper pill. It doesn’t fix the disease — it just helps the signal get through a little better while it’s in your system.
Treatments Prednisone PRED-nih-sohn
A corticosteroid used to calm the immune system’s attack in MG, often short-term or during flares.
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In plain words One of the most common steroids for quieting an overactive immune system — powerful, but famous for its own long list of side effects.
Treatments Mycophenolate Mofetil (CellCept) my-koh-FEN-oh-late / SELL-sept
An immunosuppressant that reduces antibody production, often used as a long-term steroid-sparing treatment.
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In plain words A daily pill meant to quiet the immune system down over months, so you eventually need less prednisone.
Treatments Azathioprine (Imuran) ay-zuh-THY-oh-preen / IH-myoo-ran
Another long-term immunosuppressant option, working by suppressing immune cell production.
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In plain words A slower-acting immune-calming pill, sometimes used alongside or instead of CellCept.
Treatments Rituximab (Rituxan) rih-TUK-sih-mab
A biologic infusion that targets and depletes B-cells, the immune cells producing MG antibodies — especially used for MuSK-positive MG.
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In plain words An infusion that goes after the actual antibody-making cells, rather than just calming the whole immune system down.
Treatments Efgartigimod (Vyvgart) ef-gar-TIJ-ih-mod / VIV-gart
An FcRn inhibitor, given as an infusion or as the subcutaneous Vyvgart Hytrulo, approved for generalized MG; it lowers levels of harmful antibodies in the blood.
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In plain words A newer targeted treatment that clears out the specific antibodies causing symptoms, instead of suppressing the whole immune system.
Treatments Vyvgart Hytrulo hy-TROO-loh
The under-the-skin injectable version of efgartigimod, giving the same FcRn-inhibitor effect without an IV infusion.
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In plain words Same medicine as Vyvgart, but as a shot you can potentially get in minutes instead of sitting for an infusion.
Treatments Rozanolixizumab (Rystiggo) roh-zan-oh-LIX-ih-zoo-mab / rih-STIG-oh
Another FcRn inhibitor approved for generalized MG, given as a weekly subcutaneous infusion.
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In plain words A cousin treatment to Vyvgart, in the same “clear out the bad antibodies” family, on its own schedule.
Treatments Ravulizumab (Ultomiris) rav-yoo-LIZ-oo-mab / ul-TOM-ih-ris
A complement inhibitor infusion approved for generalized MG that blocks part of the immune attack pathway, typically dosed every eight weeks after loading doses.
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In plain words An infusion on a longer schedule that works upstream, blocking one of the immune system’s attack tools before it can damage the nerve-muscle connection.
Treatments Eculizumab (Soliris) eh-kyoo-LIZ-oo-mab / soh-LEER-is
The original complement inhibitor approved for generalized MG, an IV infusion typically given every two weeks.
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In plain words Ultomiris’s predecessor — same general approach, just a more frequent infusion schedule.
Treatments Zilucoplan (Zilbrysq) zil-OO-koh-plan / ZIL-brisk
A complement inhibitor given as a once-daily self-injection for generalized MG.
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In plain words Similar goal to Soliris and Ultomiris, but a shot you give yourself at home every day instead of an infusion visit.
Treatments IVIG (Intravenous Immunoglobulin)
An infusion of donor antibodies that helps regulate the immune system, used for MG flares or crises.
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In plain words A bag of healthy donated antibodies, dripped in through an IV, to help settle down an immune system attacking its own body.
Treatments Plasmapheresis / PLEX (Plasma Exchange) plaz-muh-fuh-REE-sis
A procedure that filters the blood to remove harmful antibodies from the plasma, often used for MG crises or before surgery.
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In plain words This is what they did to me five times over ten days in the ICU — they run your blood through a machine that filters the bad antibodies out and gives the rest back.
Treatments Cryoprecipitate KRY-oh-prih-SIP-ih-tate
A blood product rich in clotting factors, sometimes given after plasma exchange because PLEX strips out fibrinogen along with the antibodies.
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In plain words The clotting-factor refill I needed after plasma exchange — turns out taking the bad antibodies out also takes some good stuff with it.
Treatments FcRn Inhibitor
A medication class (efgartigimod, rozanolixizumab) that blocks the FcRn receptor, causing the body to break down harmful antibodies faster.
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In plain words The medical family name for the “clear the bad antibodies out faster” drugs, like Vyvgart and Rystiggo.
Treatments Complement Inhibitor
A medication class (eculizumab, ravulizumab, zilucoplan) that blocks part of the immune system’s complement pathway, one of the ways MG damages the nerve-muscle junction.
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In plain words The medical family name for drugs like Soliris, Ultomiris, and Zilbrysq — a different piece of the immune attack than FcRn inhibitors block.
Treatments Biologic
A medication made from living cells rather than chemically synthesized, usually given by infusion or injection and targeting a specific part of the immune system.
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In plain words A more targeted category of drug than a regular pill — most of the newest MG treatments fall into this bucket.
Treatments Immunosuppressant
Any medication that reduces immune system activity, used broadly to describe drugs like CellCept, Imuran, and steroids.
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In plain words The umbrella term for “calms my immune system down” medications — several of my daily pills fall under this word.
Treatments Cholinesterase Inhibitor koh-lin-ES-ter-ase
A drug class, including pyridostigmine, that blocks the enzyme breaking down acetylcholine, helping more signal reach the muscle.
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In plain words The medical family name for Mestinon and similar drugs — they don’t touch the immune system, they just help the existing signal work a little harder.
Treatments Infusion
Medication delivered slowly into a vein or under the skin over a set period, rather than taken by mouth.
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In plain words Any treatment where you sit somewhere while medicine drips in — could be twenty minutes or several hours depending on the drug.
Treatments Infusion Center
A clinic or hospital unit specifically set up for administering IV medications like IVIG, biologics, or chemotherapy.
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In plain words The place you go to get plugged in — chairs, IV poles, and a lot of other people quietly doing the same thing you are.
Treatments Central Line
A catheter placed into a large vein, usually in the neck or chest, used for medications or procedures requiring reliable, high-volume IV access.
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In plain words A bigger, deeper IV line — mine went in the night before things got really scary in the ICU.
Treatments PICC Line
A peripherally inserted central catheter — a thin, long IV line placed in the arm that reaches a large vein near the heart, for longer-term IV treatment.
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In plain words A line that goes in through your arm but reaches deep — useful when you need IV access for days or weeks, not just one visit.
Treatments Port (Venous Access Port)
A small device implanted under the skin, usually in the chest and connected to a vein, for patients needing frequent or long-term IV treatments.
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In plain words A permanent “plug” under the skin so infusions don’t mean a fresh IV stick every single time.
Treatments Steroid Taper
The gradual reduction of a steroid dose over time, rather than stopping suddenly, to avoid a dangerous drop in the body’s own cortisol production.
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In plain words You can’t just quit prednisone cold turkey — your body has to be weaned off it slowly, step by step.
Treatments Off-Label Use
Prescribing a medication for a condition it wasn’t originally FDA-approved to treat, based on clinical evidence or experience.
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In plain words When your doctor prescribes something that isn’t technically “for MG” on the label, but has good reason to think it’ll help you anyway.
Treatments Specialty Pharmacy
A pharmacy handling complex, high-cost medications requiring special storage, handling, or insurance coordination — most MG biologics go through one.
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In plain words Not your neighborhood pharmacy — a separate system, its own hoops, usually a phone call (or five) before a new biologic shows up.
Symptoms Ptosis TOH-sis
Drooping of one or both upper eyelids, caused by weakness in the muscle that lifts the eyelid.
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In plain words The droopy eye — often the very first sign people notice, and for a lot of us, the one that never fully goes away.
Symptoms Diplopia dih-PLOH-pee-uh
Double vision, caused by weakness in the muscles that coordinate eye movement.
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In plain words When your eyes stop teaming up and you start seeing two of everything.
Symptoms Myasthenic Crisis my-uhs-THEN-ik
A medical emergency where MG weakness affects the breathing muscles severely enough to require ventilator support.
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In plain words The worst-case version of MG flaring — when weakness reaches your breathing and you need real, immediate help to keep going.
Symptoms Cholinergic Crisis koh-lin-ER-jik
A dangerous reaction to too much cholinesterase-inhibitor medication, causing weakness that can look similar to a myasthenic crisis but needs the opposite treatment.
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In plain words The scary twist — too much of your “helper” medication can actually cause a crisis that looks like the disease itself, which is why doctors have to figure out which one they’re dealing with, fast.
Symptoms Bulbar Symptoms BUL-bar
Weakness affecting the muscles controlled by the brainstem — chewing, swallowing, talking, and facial expression.
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In plain words When MG hits your face, mouth, and throat — slurred speech, trouble chewing, a smile that won’t quite cooperate.
Symptoms Dysarthria dis-AR-three-uh
Slurred or slow speech caused by weakness in the muscles used for talking.
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In plain words When your words come out mushy or slow, not because you don’t know what to say, but because the muscles are too tired to say it clearly.
Symptoms Dysphagia dis-FAY-juh
Difficulty swallowing, caused by weakness in the throat muscles — a symptom that can raise choking and aspiration risk.
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In plain words When even swallowing food or water becomes a workout, and one worth telling your doctor about right away.
Symptoms Fatigable Weakness
The hallmark MG pattern where a muscle starts relatively strong and progressively weakens with repeated use, then recovers with rest.
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In plain words The signature move of MG — a muscle that’s fine for the first few reps and falls apart by the tenth.
Symptoms Myasthenic Snarl
A facial expression where an attempt to smile looks more like a snarl, due to weakness in specific facial muscles.
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In plain words A smile that comes out sideways because the muscles that are supposed to pull it into shape just won’t cooperate.
Symptoms Peek Sign
A physical exam finding where, after sustained eye closure, the eyelids slowly separate due to eyelid muscle fatigue.
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In plain words A doctor asks you to close your eyes tight and hold it — if they slowly pop back open on their own, that’s a tell.
Symptoms Curtain Sign
An exam finding where lifting one drooping eyelid causes the other eyelid to droop further, revealing hidden weakness.
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In plain words Lift one droopy eyelid and the other one drops more, like the muscles are sharing one limited amount of effort between two curtains.
Symptoms Negative Inspiratory Force (NIF)
A breathing test measuring how strong an inhale is, used to monitor respiratory muscle strength and crisis risk.
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In plain words A number that tells your care team how much “pull” your breathing muscles still have — one they watch closely if things get serious.
Symptoms Forced Vital Capacity (FVC)
A breathing test measuring the total air you can forcefully exhale after a full breath in, used to track respiratory muscle strength in MG.
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In plain words Another breathing number doctors track closely — a dropping FVC is one of the clearest warning signs of an approaching crisis.
Symptoms Intubation in-too-BAY-shun
Placing a breathing tube into the airway to support or take over breathing, used in a myasthenic crisis when respiratory muscles fail.
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In plain words When breathing muscles get too weak to do the job alone, and a machine has to step in.
Symptoms BiPAP BYE-pap
A non-invasive breathing support machine (Bilevel Positive Airway Pressure) sometimes used instead of a breathing tube to help weak respiratory muscles.
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In plain words A mask-based breathing assist — sometimes enough to get someone through a rough patch without needing to be intubated.
Symptoms Exacerbation / Flare ig-zas-er-BAY-shun
A temporary worsening of MG symptoms, which can be triggered by illness, stress, heat, certain medications, or nothing identifiable at all.
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In plain words A stretch of days, or weeks, where your MG turns the volume up — sometimes for a reason you can point to, sometimes for absolutely none.
Symptoms Remission
A period where MG symptoms are minimal or absent, with or without ongoing treatment.
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In plain words The word every MG patient is chasing — a stretch of feeling more like yourself again.
Symptoms Ophthalmoplegia off-thal-moh-PLEE-juh
Weakness or paralysis of the eye muscles, affecting eye movement.
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In plain words When the muscles that steer your eyeballs get too weak to move them where you want.
Symptoms Fatigability
The medical term for how quickly a muscle tires with repeated or sustained use — the defining feature separating MG from most other kinds of weakness.
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In plain words Not just “tired” — a specific, measurable pattern of getting weaker the more you use a muscle, which is what points doctors toward MG in the first place.
Symptoms Facial Weakness (Masked Face)
Reduced facial muscle strength that can make expressions look flat, blank, or unintentionally serious.
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In plain words When your face isn’t showing what you’re actually feeling, simply because the muscles are too tired to keep up with your expression.
Symptoms Aspiration Risk as-per-AY-shun
The danger of food, liquid, or saliva entering the airway or lungs instead of the esophagus, heightened by swallowing weakness.
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In plain words The real reason swallowing trouble gets taken seriously fast — it’s not just inconvenient, it’s a safety issue for your lungs.
The System MyChart
A patient portal used by many hospital systems to view lab results, message doctors, see visit summaries, and manage appointments.
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In plain words The app where I now spend way too much of my time refreshing for lab results.
The System After Visit Summary (AVS)
A printed or digital summary given after a medical appointment, listing diagnoses, instructions, and medication changes from that visit.
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In plain words The recap sheet you get on your way out — worth reading, even when you’re exhausted and just want to go home.
The System Problem List
The running list of a patient’s diagnosed medical conditions kept in their chart, used by every provider who treats them.
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In plain words The permanent record of everything currently “on file” about your health — MG earns its own line here now.
The System Prior Authorization (PA)
Approval an insurance company requires before it will cover certain medications or procedures — common for MG biologics.
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In plain words The paperwork hoop your doctor’s office has to jump through before insurance will agree to pay for the good stuff.
The System Step Therapy
An insurance requirement to try cheaper or older treatments first, and prove they didn’t work, before covering a newer or pricier medication.
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In plain words Insurance making you try the cheaper option first, even when your doctor already knows it’s not going to be enough.
The System Formulary FOR-myoo-lair-ee
The list of medications a specific insurance plan covers, often organized into cost tiers.
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In plain words Your insurance company’s approved menu — and specialty MG drugs are almost always the most expensive item on it.
The System EOB (Explanation of Benefits)
A statement from your insurance company showing what was billed, what insurance paid, and what you may owe — not a bill itself.
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In plain words The confusing document that looks like a bill but technically isn’t one. Read the actual bill before panicking.
The System Out-of-Pocket Maximum
The most a patient has to pay for covered care in a plan year before insurance covers 100% of costs.
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In plain words The number that tells you when you can finally stop dreading every new medical bill for the rest of the year.
The System Patient Assistance Program
A program, often run by a drug manufacturer or nonprofit, that helps reduce out-of-pocket costs for expensive medications.
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In plain words Worth asking about for every single specialty MG drug — these programs can knock a shocking amount off the price.
The System REMS Program
A Risk Evaluation and Mitigation Strategy required by the FDA for certain medications, involving extra monitoring or enrollment steps for patients and prescribers.
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In plain words Extra safety paperwork some medications require — an annoying step, but it exists to keep people safe.
The System Case Manager / Patient Navigator
A healthcare professional who helps coordinate care, insurance approvals, and resources for patients with complex conditions.
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In plain words The person whose whole job is to help you untangle the system — worth asking your care team if one is available to you.
The System Portal Message
A secure message sent to or from a healthcare provider through a patient portal like MyChart.
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In plain words The modern version of “leave a message with the front desk,” except now it lives in an app and you can reread it a hundred times waiting for a reply.
The System Referral
A formal recommendation from one provider to see another, often required by insurance before a specialist visit will be covered.
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In plain words The permission slip your primary doctor has to send before insurance will pay for you to see a specialist.
The System In-Network / Out-of-Network
Whether a provider has a contract with your insurance plan (in-network, lower cost) or doesn’t (out-of-network, often far more expensive or uncovered).
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In plain words Always worth double-checking before a new specialist appointment — an out-of-network surprise bill is the last thing a chronic illness budget needs.
The System Specialty Tier Drug
The highest, most expensive cost category on an insurance formulary, where most MG biologics land.
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In plain words The tier where your MG treatment probably lives, and the reason the copay can be startling even with good insurance.
The System Home Infusion
Receiving IV medication at home from a visiting nurse instead of at a clinic or infusion center.
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In plain words Getting your infusion on your own couch instead of a clinic chair — a game-changer for people who are already running on empty.
The System Rare Disease / Orphan Drug
A “rare disease” affects fewer than 200,000 people in the U.S.; an “orphan drug” is a medication specifically developed for one.
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In plain words MG qualifies as rare, which is part of why the newest treatments are so expensive — smaller patient populations mean smaller markets and higher prices.
The System Chronic Illness
A long-lasting health condition, generally a year or more, that often requires ongoing medical attention or limits daily activities.
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In plain words The category MG falls into now — not something that resolves, but something you learn to live alongside.
The System Disability Placard
A permit allowing accessible parking, obtainable through a doctor’s certification for qualifying conditions, including some MG cases.
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In plain words Worth asking your doctor about if walking long distances or standing in line wears you out fast — you don’t have to “look sick enough” to qualify.
The System FMLA (Family and Medical Leave Act)
A federal law allowing eligible employees unpaid, job-protected leave for serious health conditions, including planned surgeries like a thymectomy.
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In plain words The paperwork that protects your job while your body needs real time to heal or recover.
Community Spoonie
A nickname for someone with a chronic illness, based on “spoon theory,” used widely across chronic-illness communities including MG groups.
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In plain words A word you’ll see constantly in the Facebook groups — a gentle, almost affectionate shorthand for “I’m managing a chronic illness.”
Community Spoon Theory
A metaphor where “spoons” represent limited daily energy; chronically ill people have fewer spoons and must budget them carefully across tasks.
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In plain words A way of explaining why showering and answering three emails can use up the same amount of energy — you only get so many spoons a day, and MG hands out fewer than most.
Community Snowflake Disease
A nickname for MG, reflecting how no two patients’ symptoms, triggers, or disease course look exactly alike.
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In plain words My favorite nickname for this disease — because just like snowflakes, no two people’s MG looks the same, which is exactly why comparing your journey to someone else’s rarely helps.
Community Flare / Flare-Up
A temporary worsening of symptoms, used interchangeably with “exacerbation” in most patient community conversations.
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In plain words The word you’ll see everywhere in the groups for “today is a rough MG day.”
Community Brain Fog
A common, non-clinical term for difficulty concentrating, remembering, or thinking clearly, often reported alongside fatigue and chronic illness.
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In plain words When your brain feels like it’s wading through static — a very real, very common companion to a body that’s fighting itself.
Community Invisible Illness
A health condition not visibly obvious to others, which can make it harder for people to understand or believe the severity of symptoms.
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In plain words The reason people say “but you look fine” — and the reason that sentence stings more than they probably realize.
Community MG Hug
A patient-community term for chest tightness or pressure some people with MG experience, thought to be related to respiratory muscle weakness.
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In plain words A name the community gave to a real, scary sensation, because giving it a name somehow makes it a little less frightening to talk about.
Community Good Day / Bad Day
Common shorthand in chronic illness communities for how much a person’s symptoms are limiting them on a given day.
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In plain words Not a throwaway phrase — a whole day’s worth of context packed into two words, and something only another spoonie fully understands the weight of.
Community Pacing
A self-management strategy of deliberately spacing out activity and rest to avoid triggering a flare or crash.
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In plain words Learning to stop before you’re forced to stop — doing a little, resting on purpose, instead of pushing until your body makes the choice for you.
Community Crash (Post-Exertional Crash)
A significant worsening of symptoms following physical, mental, or emotional exertion, sometimes delayed by hours or a full day.
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In plain words When today’s overdoing-it bill doesn’t come due until tomorrow, and by then it’s too late to undo it.
Community Rare Disease Warrior
A common self-identifier in rare disease advocacy spaces for someone living with and speaking out about their condition.
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In plain words A phrase you’ll see a lot in advocacy circles. Some people love it, some find it a little much — you get to decide what fits you.
Community Chronic Illness Community
The broader online and in-person network of people living with long-term health conditions who share resources, support, and lived experience.
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In plain words The wider circle MG patients belong to, alongside people with lupus, POTS, EDS, and dozens of other conditions who somehow all get it anyway.
Community Caregiver
Someone who provides regular physical, emotional, or logistical support to a person with a chronic illness or disability.
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In plain words The people showing up for appointments, remembering the med schedule, and carrying the weight right alongside you.
Community Support Group
A regular gathering, in person or online, of people with a shared condition or experience who offer mutual support.
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In plain words A room, or a group chat, full of people who don’t need the backstory explained before they understand.
Community Advocate / Advocacy
Speaking up publicly or working to raise awareness, support, or systemic change around a condition or community.
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In plain words What this whole website is about — turning my own hardest year into something that helps the next person feel less alone in theirs.
Community Patient-Reported Outcome
Health information, like the MG-ADL score, that comes directly from the patient’s own account rather than a clinical test.
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In plain words A fancy way of saying “your own words about how you’re doing” actually count as real medical data.
Community Zebra
A phrase from the saying “when you hear hoofbeats, think horses, not zebras,” used in rare disease communities to describe patients whose diagnosis was the unlikely, less-common explanation.
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In plain words A word rare disease patients wear as a badge of honor, for the doctors who kept looking past the obvious answer until they found the real one.
Community Teal Awareness Ribbon
Teal is the official awareness color for myasthenia gravis, used in campaigns, merchandise, and awareness months.
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In plain words The color you’ll start noticing everywhere once you know to look for it — MG’s own little flag.
Community Pillbox Life
A common, informal phrase for the daily reality of managing multiple medications on a strict schedule.
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In plain words When your week gets organized around little plastic compartments, and “did I take my pills” becomes a genuinely hard question by 3pm.
Community Window of Wellness
An informal term for the stretch of time each day, often mid-morning before fatigue builds, when MG symptoms are typically at their mildest.
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In plain words The part of the day your body actually cooperates — worth learning yours and protecting it like the resource it is.
Community New Normal
A common phrase for the adjusted baseline of daily life after a chronic diagnosis, replacing the “old normal” that existed before.
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In plain words Not a lesser life, just a different one — the phrase you’ll reach for a lot in that first year.
Community Med Alert Bracelet
A piece of jewelry engraved with key medical information, like an MG diagnosis and crisis risk, meant to inform first responders in an emergency.
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In plain words A small piece of jewelry that could genuinely save your life if you can’t speak for yourself in an emergency.
Community Flare Diary / Symptom Tracker
A personal log of symptoms, triggers, and severity over time, used to spot patterns and share with your care team.
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In plain words Your own detective notebook — patterns that feel invisible day to day often jump out once you see two weeks of them written down.
Community Medical Gaslighting
When a patient’s real symptoms are dismissed, minimized, or attributed to anxiety or exaggeration by a healthcare provider.
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In plain words When “it’s probably just stress” gets said one too many times before someone finally orders the right test — a story far too many MG patients share, including in the early days of mine.
No match. Try a shorter word — or the drug's brand name.
