Hope & Support!
Hello and welcome! We're so glad you found us. If you've recently been diagnosed with myasthenia gravis, you're not alone. Our community is here to offer support, guidance, and plenty of hope for the journey ahead. There is a lot of information out there that will benefit you. I can be OVERWHELMING so give yourself GRACE and PATIENCE as you navigate this new journey of your life. We are all learning and growing together.
Newly Diagnosed with Myasthenia Gravis
Start Assembling Your Wellness Team
Begin creating a team that will support your well-being, including:
- Neuromuscular Specialist
- Functional Medicine Provider
- Health Coach
- Psychologist
- Physical or Occupational Therapist
- Caregiver
- Integrative Dentist
- Neuro-Ophthalmologist
Get Connected
Join local and national support groups to connect with others experiencing similar symptoms. These communities provide invaluable knowledge gained from lived experiences. See our list of support groups.
Clinical Research
On going research continues with myasthenia gravis. As a newly diagnosed person this may be an option for you once you have explored the various treatment options currently available. It is also a good practice to review the studies to help you stay on top of how the research and treatment options are changing. There is currently no known cure for MG however we believe with lifestyle changes and staying on top of your physician recommended therapies you can live a very full life. Clinical studies
Take Charge of Your Life
[ ] Create a toolbox of self-care items to focus on your physical and mental well-being.
[ ] Explore the holistic wellness and MG resources on the MG Holistic Society website for tips on nutrition, lab work, and treatment options. Learning about treatments can be overwhelming, but it empowers you to make informed decisions.
[ ] Be patient with yourself.
[ ] Don't hesitate to question the level of care you receive.
[ ] Investigate your symptom triggers, which could include stress, chemical or environmental exposures, adrenal insufficiencies, infections, or nutritional deficiencies.
[ ] Keep a journal of your symptoms and daily wins of gratitude.
[ ] Work with your wellness team to create a personalized wellness plan. Everyone's journey is unique and requires different approaches.
Engage with Friends and Family
Have open conversations with your loved ones about myasthenia gravis. Invite them to support meetings and MG Awareness Day. Explain that MG is unpredictable, which means your symptoms may fluctuate. Ask for their grace and patience when you're unable to attend events or need to leave early.
Empowerment Through Knowledge
Understanding your condition is the first step towards managing it effectively. We provide resources, including educational materials, webinars, and workshops, to help you learn about myasthenia gravis and the latest treatment options.
Community Connection
Join our warm and welcoming community of individuals who truly understand what you're going through. Share experiences, ask questions, and build friendships with others on similar paths. Our support groups, both online and in-person, are great places to connect and find encouragement.
Inspiration and Stories of Triumph
Discover inspiring stories from people living vibrant lives with myasthenia gravis. Our members share personal journeys, highlighting strength and resilience.
Positive Health and Wellness
We believe in a holistic approach to well-being. Explore our resources on nutrition, exercise, and mental health, all tailored to support your journey. With the right tools and strategies, you can live a full and active life.
Advocacy and Awareness
Join us in spreading awareness and advocating for better understanding and treatment of myasthenia gravis. Together, we can make a difference and help others receive the support they need.
Remember, you are not defined by your diagnosis. With hope, support, and the right information, you can face the future with confidence and optimism.
Welcome to a community where you belong, and where hope is always at the forefront. Together, we are stronger!
Tips for making the most of your medical appointments
1. Myasthenia Gravis (MG)
- A chronic autoimmune disorder that causes muscle weakness and fatigue. The body's immune system mistakenly attacks the communication between nerves and muscles.
2. Autoimmune Disease
- A condition where the immune system attacks the body's own tissues, mistaking them for harmful invaders.
3. Acetylcholine
- A neurotransmitter, or chemical messenger, that transmits signals from nerves to muscles, enabling them to contract.
4. Acetylcholine Receptor Antibodies
- Antibodies produced by the immune system in MG that block or destroy acetylcholine receptors on muscles, leading to weakness.
5. Antibodies
- Proteins made by the immune system to help fight off infections, but in MG, they mistakenly target the body’s own tissues.
6. Thymus Gland
- A gland located in the chest that is involved in the immune system. In MG patients, it may be enlarged or contain abnormal growths (thymomas).
7. Thymectomy
- A surgical procedure to remove the thymus gland, often performed to help manage MG symptoms.
8. Fatigue
- Extreme tiredness or exhaustion that doesn't go away with rest and is a common symptom of MG.
9. Ptosis
- Drooping of one or both eyelids, a common symptom of MG due to weakness in the muscles that control the eyelids.
10. Diplopia
- Double vision caused by weakness in the muscles that control eye movement.
11. Muscle Weakness
- The primary symptom of MG, which can affect different muscle groups, including those involved in eye movement, facial expression, chewing, swallowing, and breathing.
12. Crisis (Myasthenic Crisis)
- A severe complication of MG where muscles that control breathing become too weak, leading to respiratory failure and requiring emergency treatment.
13. Immunosuppressants
- Medications that reduce the activity of the immune system to decrease the production of antibodies that attack the body's own tissues.
14. Corticosteroids
- A type of medication often used to reduce inflammation and suppress the immune system in MG patients.
15. Pyridostigmine (Mestinon)
- A medication commonly used to treat MG symptoms by improving communication between nerves and muscles.
16. Plasmapheresis
- A procedure that filters the blood to remove harmful antibodies, used to treat severe MG symptoms or during a crisis.
17. IVIG (Intravenous Immunoglobulin)
- A treatment that involves infusing antibodies from donated blood into a patient to help neutralize the harmful antibodies in MG.
18. Neurologist
- A doctor who specializes in treating disorders of the nervous system, including MG.
19. EMG (Electromyography)
- A diagnostic test that measures the electrical activity of muscles to help diagnose MG.
20. Tensilon Test
- A test that involves injecting a drug (edrophonium) to see if it temporarily improves muscle strength, helping to diagnose MG.
21. Cholinesterase Inhibitors
- Medications that prevent the breakdown of acetylcholine, helping to improve muscle strength in MG patients.
22. Remission
- A period during which symptoms of MG are reduced or absent. Total remission requires zero medication with zero symptoms experienced.
23. Relapse
- The return or worsening of MG symptoms after a period of improvement.
24. Ocular Myasthenia Gravis
- A form of MG where muscle weakness is limited to the
eye muscles, causing symptoms like ptosis and diplopia.
25. Generalized Myasthenia Gravis
- A form of MG that affects muscles throughout the body, not just the eyes.
26. Monoclonal Antibodies
- Laboratory-made proteins that can bind to specific targets in the body, including cells involved in the immune response. In MG, they are used to target and reduce the activity of harmful immune cells or molecules.
27. Complement System
- A part of the immune system that enhances the ability of antibodies to clear pathogens. In MG, the complement system may be overactive and contribute to muscle weakness.
28. C5 Inhibitors
- A type of monoclonal antibody that blocks a protein in the complement system (C5), helping to reduce the immune system's attack on muscles. **Eculizumab (Soliris)** is an example of a C5 inhibitor used to treat MG.
29. FcRn Inhibitors
- Medications that block the neonatal Fc receptor (FcRn), which normally helps recycle antibodies. By inhibiting FcRn, these drugs reduce the levels of harmful antibodies in the blood. **Efgartigimod (Vyvgart)** is an example used in MG treatment.
30. Anti-MuSK Antibodies
- Antibodies that target Muscle-Specific Kinase (MuSK), a protein involved in forming and maintaining the communication between nerves and muscles. Anti-MuSK antibodies are found in some MG patients and can cause muscle weakness.
31. Rituximab
- A monoclonal antibody that targets B-cells (a type of white blood cell) to reduce the production of harmful antibodies. Rituximab is sometimes used to treat MG, especially in patients with anti-MuSK antibodies.
32. B-cells
- A type of white blood cell that produces antibodies. In MG, B-cells may produce antibodies that mistakenly attack the body's own tissues.
33. T-cells
- A type of white blood cell that plays a central role in the immune response. T-cells help B-cells produce antibodies and may contribute to the development of autoimmune diseases like MG.
34. Cytokines
- Small proteins released by cells that have a specific effect on interactions and communication between cells. Some cytokines may promote inflammation, which can exacerbate MG symptoms.
35. Checkpoint Inhibitors
- A class of drugs used in cancer therapy that can trigger or worsen autoimmune diseases like MG by unleashing the immune system to attack cancer cells, but also healthy tissues.
36. Immunomodulatory Drugs
- Medications that modify the immune response rather than suppressing it entirely. These drugs can help manage MG by balancing the immune system's activity.
37. AChE Inhibitors (Acetylcholinesterase Inhibitors)
- Medications that block the enzyme acetylcholinesterase, which breaks down acetylcholine. By inhibiting this enzyme, these drugs increase acetylcholine levels and improve muscle strength in MG patients.
38. Exacerbation
- A worsening of symptoms, often triggered by stress, infection, or certain medications. Managing triggers is crucial for patients with MG.
39. Refractory Myasthenia Gravis
- A form of MG that does not respond well to standard treatments, requiring alternative therapies such as monoclonal antibodies or other advanced treatments.
40. Plasma Cells
- A type of B-cell that produces large amounts of antibodies. In MG, plasma cells may be targeted by specific treatments to reduce harmful antibody production.
41. Biologic Drugs
- Medications derived from living organisms or their products, used to target specific components of the immune system in MG. Examples include monoclonal antibodies like rituximab and eculizumab.
42. Gene Therapy
- An experimental approach that involves modifying or repairing genes to treat diseases. Although not yet standard for MG, gene therapy research is ongoing as a potential future treatment.
43. Molecular Targeting
- A strategy in drug development where medications are designed to specifically target molecules involved in the disease process, such as antibodies or proteins in MG.
44. Biomarkers
- Biological molecules found in blood, other body fluids, or tissues that indicate the presence of a disease. In MG, biomarkers may be used to diagnose the condition or monitor response to treatment.
45. Clinical Trials
- Research studies that test new treatments or drugs in humans to assess their safety and effectiveness. Participation in clinical trials may offer access to new therapies for MG.
46. Off-label Use
- When a drug is prescribed for a condition other than the one it was originally approved for. Some medications are used off-label to treat MG symptoms.
47. Cytotoxic Drugs
- Medications that kill or damage cells. These drugs are sometimes used in MG to suppress the immune system by reducing the number of immune cells that attack the body.
48. Apoptosis
- The process of programmed cell death. Some treatments for MG may work by inducing apoptosis in harmful immune cells.
49. Chimeric Antigen Receptor (CAR) T-cell Therapy
- A type of therapy that involves modifying a patient's T-cells to attack specific cells. While primarily used in cancer treatment, research is exploring its potential for autoimmune diseases like MG.
50. Pharmacokinetics
- The study of how drugs move through the body, including absorption, distribution, metabolism, and excretion. Understanding pharmacokinetics helps in optimizing MG treatment.
1. Holistic Health
- An approach to wellness that considers the whole person—body, mind, spirit, and emotions—rather than just treating specific symptoms or illnesses.
2. Mind-Body Connection
- The concept that physical health is directly influenced by mental and emotional well-being. Techniques like meditation, yoga, and biofeedback can help manage autoimmune symptoms by promoting relaxation and reducing stress.
3. Functional Medicine
- A systems-oriented medical approach that seeks to identify and address the root causes of disease, considering the interactions between genetics, environment, and lifestyle.
4. Anti-Inflammatory Diet
- A dietary approach aimed at reducing inflammation in the body, which is a key factor in many autoimmune diseases. It typically includes foods like leafy greens, fatty fish, nuts, and seeds while avoiding processed foods, sugar, and trans fats.
5. Elimination Diet
- A method of identifying food sensitivities or allergies by removing specific foods from the diet and then gradually reintroducing them to observe any adverse reactions, which can be important for managing autoimmune symptoms.
6. Adaptogens
- Herbs and natural substances that help the body adapt to stress and normalize bodily processes. Common adaptogens include ashwagandha, rhodiola, and holy basil, which may support immune function and reduce fatigue.
7. Detoxification
- The process of removing toxins from the body, which can be done through diet, supplements, or lifestyle changes. This is believed to support overall health and reduce the burden on the immune system.
8. Gut-Brain Axis
- The bidirectional communication network that links the gut and the brain. Imbalances in gut health can affect mental well-being and contribute to autoimmune conditions.
9. Leaky Gut Syndrome
- A condition where the lining of the small intestine becomes damaged, allowing undigested food particles, toxins, and microbes to enter the bloodstream, potentially triggering or worsening autoimmune responses.
10. Probiotics
- Live beneficial bacteria that support gut health, which is crucial for a balanced immune system. Probiotics can be taken as supplements or found in fermented foods like yogurt, kefir, and sauerkraut.
11. Mindfulness
- A mental practice that involves focusing on the present moment without judgment. Mindfulness techniques can help reduce stress, which is a known trigger for autoimmune flare-ups.
12. Naturopathy
- A form of alternative medicine that emphasizes the body's inherent ability to heal itself, using natural remedies like herbs, nutrition, and lifestyle counseling.
13. Ayurveda
- An ancient holistic healing system from India that focuses on balancing the body's energies (doshas) through diet, herbal treatments, and lifestyle practices to promote overall health.
14. Acupuncture
- A traditional Chinese medicine practice that involves inserting thin needles into specific points on the body to promote healing and balance energy flow, which may help alleviate symptoms of autoimmune diseases.
15. Chronic Inflammation
- Long-term inflammation that can contribute to the development and progression of autoimmune diseases. Managing chronic inflammation is a key goal of holistic health approaches.
16. Energy Healing
- A practice that involves manipulating the body's energy fields to promote healing and balance. Techniques like Reiki and Qi Gong are believed to support immune function and reduce stress.
17. Essential Oils
- Concentrated plant extracts used in aromatherapy and topical applications to promote healing and well-being. Certain essential oils like lavender and frankincense may help reduce inflammation and stress.
18. Mindful Eating
- A practice that involves paying full attention to the experience of eating and drinking, which can improve digestion and reduce stress on the immune system.
19. Meditation
- A practice of focused attention and relaxation that can reduce stress, improve mental clarity, and support immune health.
20. Chronic Fatigue
- Persistent, severe tiredness that is not relieved by rest, commonly experienced in autoimmune diseases. Holistic approaches may include lifestyle changes, dietary adjustments, and stress management techniques.
21. Stress Management
- Techniques and strategies to reduce stress, which is crucial for managing autoimmune diseases. This can include practices like yoga, deep breathing exercises, and time management.
22. Detox Diet
- A short-term dietary regimen intended to cleanse the body of toxins. It often includes a period of fasting or consuming specific foods and liquids believed to support liver function and reduce inflammation.
23. Complementary and Alternative Medicine (CAM)
- A range of medical practices and products that are not considered part of conventional medicine. This includes practices like acupuncture, herbal medicine, and chiropractic care.
24. Biofeedback
- A technique that teaches people to control physiological functions such as heart rate and muscle tension by providing real-time feedback, which can be helpful in managing stress and pain associated with autoimmune diseases.
25. Inflammation
- The body's response to injury or infection, which can become chronic in autoimmune diseases. Holistic approaches often focus on reducing inflammation through diet, lifestyle, and natural therapies.
26. Herbal Medicine
- The use of plants and plant extracts to support health and treat illness. Herbs like turmeric, ginger, and echinacea are commonly used to support immune function and reduce inflammation in autoimmune diseases.
27. Nutritional Therapy
- A holistic approach to healing that focuses on the use of whole foods and nutrients to support the body’s natural healing processes, particularly important in managing autoimmune conditions.
28. Epigenetics
- The study of how lifestyle and environmental factors can affect gene expression without changing the DNA sequence. Understanding epigenetics can help in developing personalized approaches to managing autoimmune diseases.
29. Ayurvedic Diet
- A dietary approach based on the principles of Ayurveda, which tailors nutrition to an individual’s specific dosha (body type) to promote balance and health.
30. Chiropractic Care
- A form of alternative medicine that focuses on diagnosing and treating mechanical disorders of the musculoskeletal system, particularly the spine, which may help relieve pain and improve function in autoimmune conditions.
31. Functional Medicine Practitioner
- A healthcare provider who practices functional medicine, focusing on identifying and addressing the root causes of disease. These practitioners often use a combination of medical tests, lifestyle assessments, and personalized treatment plans to support overall health.
32. Integrative Medicine Practitioner
- A healthcare provider who combines conventional medical treatments with complementary therapies such as acupuncture, massage, and herbal medicine. Integrative medicine emphasizes a holistic approach to health and healing.
33. Nutritionist
- A professional who specializes in food and nutrition, helping individuals make dietary choices that support their health. For people with autoimmune diseases, a nutritionist can help design diets that reduce inflammation and promote healing.
34. Registered Dietitian (RD)
- A nutrition expert who has met specific educational and professional requirements and is licensed to provide medical nutrition therapy. RDs can create specialized meal plans to manage symptoms and improve overall health in autoimmune conditions.
35. Health Coach
- A professional who helps individuals set and achieve health-related goals, often focusing on lifestyle changes, diet, exercise, and stress management. Health coaches support clients in creating sustainable habits that promote long-term well-being.
36. Naturopathic Doctor (ND)
- A licensed healthcare provider who practices naturopathic medicine, which emphasizes natural remedies, lifestyle changes, and preventive care. NDs often use herbal medicine, nutrition, and other holistic approaches to treat autoimmune diseases.
37. Herbalist
- A practitioner who specializes in using plants and plant extracts for medicinal purposes. Herbalists can recommend specific herbs to support immune function, reduce inflammation, and address other symptoms of autoimmune diseases.
38. Acupuncturist
- A healthcare provider trained in traditional Chinese medicine who uses acupuncture to balance the body's energy and promote healing. Acupuncture may be used to alleviate pain, reduce stress, and improve overall health in autoimmune conditions.
39. Chiropractor
- A healthcare provider who focuses on diagnosing and treating musculoskeletal disorders, particularly those related to the spine. Chiropractors may use spinal adjustments, exercises, and other therapies to relieve pain and improve function.
40. Psychotherapist
- A mental health professional who provides therapy to help individuals manage emotional and psychological challenges. For people with autoimmune diseases, a psychotherapist can offer support in coping with the stress and mental health aspects of chronic illness.
41. Physical Therapist (PT)
- A healthcare provider who specializes in rehabilitating physical impairments and promoting mobility through exercises and manual therapy. PTs can help individuals with autoimmune diseases improve strength, flexibility, and function.
42. Occupational Therapist (OT)
- A healthcare provider who helps individuals perform daily activities more effectively, often focusing on adaptations to manage the symptoms of chronic conditions like autoimmune diseases.
43. Massage Therapist
- A professional who uses manual techniques to manipulate the body's soft tissues, promoting relaxation, reducing pain, and improving circulation. Massage therapy can be beneficial for managing muscle pain and stress in autoimmune diseases.
44. Homeopath
- A practitioner who uses homeopathic remedies, which are highly diluted substances, to stimulate the body’s natural healing processes. Homeopathy is based on the principle of "like cures like" and may be used to support overall health in autoimmune conditions.
45. Ayurvedic Practitioner
- A healthcare provider trained in Ayurveda, a traditional Indian system of medicine. Ayurvedic practitioners use diet, herbs, yoga, and other techniques to balance the body’s energies and promote health.