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Myasthenia Gravis
Welcome to Our Myasthenia Gravis Support, Info & Resources Page!
Aimee Zehner, MG Patient & Advocate - Raising Awareness for Myasthenia Gravis:
My MG ptosis (eyelid drooping) & facial weakness with asymmetry was right on cue at a video shoot I did in L.A. for the upcoming MG Stylist Campaign, sponsored by More Than MG!
Check out Aimee speaking @ the 2023 MGFA National Patient Conference in NOLA, via Alexion's amazing More Than MG (MTMG) Campaign!
Aimee Speaking at the 2023 MGFA National Patient Conference!
Check out Aimee Zehner, CEO/Founder of EveryBody Empowered, speaking on the "Little Things Make A Big Difference" panel presentation via Alexion's MoreThanMG Campaign @ The 2023 MGFA National Patient Conference, New Orleans, LA. Skip to 2:00:46 to view the panel.
Special Thanks to my fellow Panelists Seferino Castro, Liz Plowman, our Moderators Jennifer Yates and Michelle Miller. And Infinite Gratitude to Alexion, HashtagHealth, and the MGFA for making this presentation possible.
*Myasthenia Gravis News* Shines Spotlight On Our Panel
At the 2023 MGFA National Patient Conference
Don't take my word for it... See what Marisa Wexler from Myasthenia Gravis News has to say about our Panel Presentation for Alexion's More Than MG Campaign "Little Things Make a Big Difference"
Want to create a Private/Customized MG Support Group?
Everything You Need to Know About Myasthenia Gravis
What is Myasthenia Gravis (MG)?
Myasthenia Gravis (MG) is a rare, autoimmune, neuromuscular disease that causes muscle weakness in the body's voluntary muscles (muscles that you can move by thinking about them). There are estimated to be approximately 65,000 patients with MG in the United States.
According to the Muscular Dystrophy Association "Myasthenia Gravis (MG) is a chronic autoimmune disease — a disease that occurs when the immune system mistakenly attacks the body’s own tissues.In MG, the immune system attacks and interrupts the connection between nerve and muscle, called the neuromuscular junction (NMJ). This causes weakness in the skeletal muscles, which are responsible for breathing and moving parts of the body."
The National Organization for Rare Disorders says that "Myasthenia gravis is a neuromuscular disorder primarily characterized by muscle weakness and muscle fatigue. Although the disorder usually becomes apparent during adulthood, symptom onset may occur at any age. The condition may be restricted to certain muscle groups, particularly those of the eyes (ocular myasthenia), or may become more generalized (generalized myasthenia gravis), involving multiple muscle groups. Most individuals with myasthenia gravis develop weakness and drooping of the eyelids (ptosis); weakness of eye muscles, resulting in double vision (diplopia); and excessive muscle fatigue following activity. Additional features commonly include weakness of facial muscles; impaired speech (dysarthria); difficulties chewing and swallowing (dysphagia); and weakness of the upper arms and legs (proximal limb weakness). In addition, in about 10 percent of patients, affected individuals may develop potentially life-threatening complications due to severe involvement of muscles used during breathing (myasthenic crisis). Myasthenia gravis results from an abnormal immune reaction in which the body’s natural immune defenses (i.e., antibodies) inappropriately attack and gradually injure certain receptors in muscles that receive nerve impulses (antibody-mediated autoimmune response)." NORD also says that "Autoimmune Myasthenia Gravis has a prevalence of approximately 14-40 per 100,000 individuals in the United States. Reports indicate that the frequency of the disorder has appeared to increase over the last several decades. This may be because of better identification of patients, but also autoimmune disorders in general are increasing in frequency across the world." More info from NORD can be found here https://rarediseases.org/rare-diseases/myasthenia-gravis/
The muscle weakness that occurs in MG is unpredictable and fluctuates in severity from mild to debilitating, and may impact any or all of the voluntary muscles at a given time. Voluntary muscles include facial muscles, the throat/neck/mouth muscles (aka "bulbar muscles"), shoulders/traps, arms, hands, diaphragm, abdomen/torso/back, legs, all the way down to the toes. The muscle weakness varies in the length of time or duration of the weakness, and may improve with rest. Patients can also experience a cumulative affect of pushing one's body to do too much with physical activities where the body essentially gives out, causing a FULL STOP on activities until the muscles are able to regain strength. For some patients this improvement can happen with rest, while many others require treatment.
Thomas Willis, a physician at Oxford in 1672, was the first to document a case of Myasthenia Gravis, at a time when not much was understood about the disease. All these years later, research has lead us to a better understanding of MG, the diagnostics, associated auto-antibodies, symptoms and how to treat it. In the USA, there are estimated to be approximately 65,000 patients living with Myasthenia Gravis. There is no cure for this disease.
According to the Myasthenia Gravis Foundation of America:
"The voluntary muscles of the entire body are controlled by nerve impulses that arise in the brain. These impulses travel down the nerves to the place where the nerves meet the muscle fibers. Nerve fibers do not actually connect with muscle fibers. There is a space between the nerve ending and muscle fiber, called the neuromuscular junction.
When the nerve impulse originating in the brain arrives at the nerve ending, it releases a chemical called acetylcholine. Acetylcholine travels across the space to the muscle fiber side of the neuromuscular junction where it attaches to many receptor sites. The muscle contracts when enough of the receptor sites have been activated by the acetylcholine.
For someone with MG, there can be as much as an 80% reduction in the number of these receptor sites. The reduction in the number of receptor sites is caused by an antibody that destroys or blocks the receptor site. Antibodies are proteins that play an important role in the immune system. They are normally directed at foreign proteins called antigens that attack the body. Such foreign proteins include bacteria and viruses. Antibodies help the body to protect itself from these foreign proteins.
While it is not still fully understood why, the immune system of the person with MG makes antibodies against the receptor sites of the neuromuscular junction. The antibodies destroy the receptor sites more rapidly than the body can replace them. Muscle weakness occurs when acetylcholine cannot activate enough receptor sites at the neuromuscular junction. When it comes to diagnosing MG, abnormal antibodies can be measured in the blood of most people with MG, but not all." To read this and more info from the MGFA, go to: https://myasthenia.org/MG-Education
For more info from MDA, go to: https://www.mda.org/disease/myasthenia-gravis
What are the subtypes and antibodies of Myasthenia Gravis?
There are different types of Myasthenia Gravis. Generalized or gMG (where the disease can affect ALL voluntary muscles), Ocular (which affects only muscles in the eyes), Transient Neonatal, and Refractory MG (when the gMG patient's treatments have failed, and there are no more life-saving options). Patients with Generalized MG (gMG) are then divided into subtypes based on which auto-antibodies they test positive for (if any). We are focusing on Generalized Myasthenia Gravis on this page. More info gMG, about Ocular or Transient Neonatal MG can be found with NIH, NORD, the MDA and MGFA; all well-recognized organizations that provide education about Myasthenia Gravis.
MG and Auto-Antibodies
There are different auto-antibodies that have been found in MG patients, which have to do with disrupting/destroying the functioning between nerve signals and muscle fibers in the neuromuscular junction throughout the voluntary muscles. The most common antibodies found in 90% of MG patients are AChR (Acetyl Choline Receptor), &/or MUsK (Muscle Specific Receptor Tyrosine Kinase). While only 10% of the MG population may be Seronegative (SN_gMG) to AChR or MUsK. Seronegative MG means the patients have tested negative for known auto-antibodies as related to MG. Other patients have even rarer auto-antibodes such as LRP4 (Low-density Lipoprotein Receptor–related Protein 4), Agrin and Titin. These other gMG subtypes of auto-antibodies are considered "ultra-rare" and affect a small portion of MG patients. LRP4 for example, only represents 1-3% of the MG population. There are also some MG patients who are Seronegative (SN), who have not yet been tested for the rarer auto-antibodies. Despite advancements in MG Research over the past decade, accessiility to testing for LRP4, Agrin and Titin remains challenging. Additionally there are physicians in practice who remain outdated in their knowledge of MG, the rarer antibodies, and treatments availabie. This is why choosing an up-to-date Neuromuscular Specialist and Care team is encouraged.
Myasthenia Gravis Symptoms
MG Symptoms can include:
- Droopy eyelids or "Ptosis"
- Double Vision or "Diplopia" (seeing double)
- Drooping or sagging facial muscles which may be symmetrical or asymmetrical such as with eyebrows, cheeks or smile
- Difficulty Chewing/Swallowing (possibly with Choking or Aspiration) aka "Dysphagia"
- Difficulty Speaking/Singing (voice gets hoarse, weak, raspy, or goes out completely aka "Dysphonia")
- Impaired Speech aka "Dysarthria," or speech that becomes nasal or slurred
- Difficulty using arms/hands (ex. lifting, carrying items or typing/writing, difficulty brushing hair)
- Difficulty walking and/or climbing stairs
- Difficulty holding body upright, or staying in an upright seated position
- Difficulty standing
- Muscle weakness that gets worse with exertion and gets better with rest.
- Sensation of feeling weighted down as if lead or concrete were poured into one's muscles.
- A burning sensation in muscles that feel so weak you can hardly move them.
Here is what NORD (the National Organization for Rare Disorders) has to say about the signs, symptoms and causes of MG:
Signs & Symptoms
"Symptoms may be variable, with disease involvement potentially localized to certain muscles or affecting multiple muscles. In some affected individuals, the disease process may be limited to certain eye muscles, which is often described as “ocular myasthenia.” In those with more generalized disease or “generalized myasthenia gravis,” affected muscles may include those of the eyes, face, jaw, and throat region; arm and leg (limb) muscles; and muscles involved in breathing (respiratory muscles).
The disorder often begins with weakness of muscles controlling the eyes, resulting in drooping of the upper eyelids (ptosis), double vision (diplopia), or both. Individuals may also develop weakness of muscles of the face, jaw, and throat. In such cases, associated symptoms may include difficulties speaking (dysarthria), causing the voice to sound weak, hoarse, or “nasally,” and increasing chewing and swallowing difficulties (dysphagia) during the course of meals, leading to choking, coughing, or inhalation (aspiration) of food or liquids. Some individuals may also develop limb weakness and easy fatigability of arm and leg muscles. In approximately 10 percent of patients, myasthenic crisis or sudden severe weakness of the jaw and throat (oropharyngeal) or respiratory muscles occurs, requiring respiratory assistance. Sudden worsening of weakness may be triggered by infections, severe stress, surgery, or a reduction or sudden increase of prednisone. Patients with antibodies to MuSK may develop muscle atrophy, in particular of facial and tongue muscles.
The course of the myasthenia gravis is highly variable. For example, the degree of muscle weakness may vary over hours, from day to day, or over weeks and months, tending to increase with repeated muscle use and to improve with rest. In addition, particularly during the first years after disease onset, some affected individuals may experience alternating periods in which symptoms temporarily subside or worsen (remissions and exacerbations). A short-term aggravation of symptoms may be triggered by a variety of factors, including infection, excessive physical activity, menstruation, and after delivery of a child.
Infants of mothers who have myasthenia gravis may develop a temporary (transient) form of the disorder beginning within approximately 48 hours after birth. Known as transient neonatal myasthenia gravis, the condition may be characterized by generalized muscle weakness and low muscle tone (hypotonia); impaired sucking or swallowing; a weak cry; respiratory insufficiency; and/or little spontaneous movement. Such abnormalities may be present for days to weeks, after which affected infants have normal muscle strength.
Causes
Most individuals with myasthenia gravis (MG) have no family history of MG and the disorder appears to occur spontaneously (sporadically) for unknown reasons. However, upwards of 5 percent of patients may have family members with MG or other autoimmune disorders. Individuals with MG have an increased frequency of certain genetically determined “human leukocyte antigens” (HLAs), suggesting that genetic predisposition may play some role. (HLAs are proteins that play an important role in the body’s immune system; they influence the outcome of transplantation and appear to affect an individual’s predisposition to certain diseases.) Other autoimmune diseases also appear to occur with increased frequency in individuals with MG, including thyroid disorders and systemic lupus erythematosus. These observations suggest that there is some genetic predisposition to MG which requires a trigger from the environment to cause the disease.
Myasthenia gravis is caused by an abnormal immune reaction (antibody-mediated autoimmune response) in which the body’s immune defenses (i.e., antibodies) inappropriately attack certain proteins in muscles that receive nerve impulses. The areas of contact between nerve endings and skeletal muscle fibers are known as neuromuscular junctions. Nerve endings release a chemical (the neurotransmitter acetylcholine) that transmits impulses to muscle fibers, ultimately resulting in their contraction. However, in individuals with myasthenia gravis, antibodies are inappropriately directed against sites (receptors) on the surface of certain muscle cells that bind with the neurotransmitter acetylcholine (acetylcholine receptors). (These antibodies are known as “anti-acetylcholine receptor antibodies [anti-AChR].) The abnormal autoimmune response results in a decreased number of acetylcholine receptors, causing failed nerve transmission at certain neuromuscular junctions and associated deficiency or weakness of muscle contractions. Some patients with anti-AChR have antibodies that attack another protein called the muscle specific kinase protein (MuSK). These anti-MuSK antibodies also lead to a decrease in the number of acetylcholine receptors. Recently, antibodies to LRP-4 (lipoprotein receptor protein 4) were identified in patients without antibodies to MuSK or AChR. In five to eight percent of patients an antibody in the blood cannot be identified but patients have other tests consistent with myasthenia gravis.
The specific cause of abnormal autoimmune responses in patients with myasthenia gravis is unknown. However, researchers suggest that the thymus has some role in this process. According to reports in the medical literature, up to approximately 75 percent of individuals with myasthenia gravis have distinctive abnormalities of the thymus. In most cases, there are increased numbers of cells in the thymus (hyperplasia). In addition, in about 10 percent of affected individuals, the thymus contains a tumor (thymoma) that is typically noncancerous (benign). However, some thymomas may be malignant. Researchers suggest that the thymus of MG patients does not appropriately eliminate cells that produce antibodies that attack body tissues. In the case of MG antibodies are produced that react against acetylcholine receptors, triggering the abnormal autoimmune response within the thymus. (A lymphoid tissue organ located behind the breastbone, the thymus plays an important role in the immune system beginning during early fetal development until puberty. It is important in the maturation of certain specialized white blood cells [T lymphocytes] that have several functions, including assisting in the recognition of certain foreign proteins [antigens] or binding to cells invaded by microorganisms and destroying them.) The abnormalities that lead to production of anti-MuSK antibodies is poorly understood and appears not to involve the thymus.
Some infants born to mothers with myasthenia gravis may develop temporary muscle weakness and associated findings (i.e., transient neonatal myasthenia gravis). This condition results from the passage of anti-acetylcholine receptor antibodies through the placenta to the unborn child during pregnancy."
To read more from NORD about MG, visit their site: https://rarediseases.org/rare-diseases/myasthenia-gravis/
Myasthenia Gravis Diagnosis and Diagnostics
At present, MG diagnostics (testing and clinical evaluation) typically includes:
- Clinical Evaluation of Symptoms / Patient History
- Physical and Neurologic Exam
- Serology (Blood) Testing
- EMG (Electromyography) Testing
- SFEMG (Single Fiber EMG) Testing
- RNS (Repetitive Nerve Study)
- CT scan or MRI of mediastinum to visualize the thymus
- Additional testing may be conducted to rule out other illnesses that could be causing symptoms
- The Ocular Ice Test (more info below, from NORD)
According to NORD:
"Myasthenia gravis is diagnosed based upon a thorough clinical evaluation, detection of characteristic symptoms and physical findings, a detailed patient history, and a variety of specialized tests. The diagnosis is suspected based on a characteristic distribution of muscle weakness and fatigue, without impairment other of neurologic function.
"Specialized blood studies are also conducted to detect the presence of antibodies to the acetylcholine receptor or muscle specific kinase. Acetylcholine receptor antibodies may be detected in up to 90 percent of affected individuals with generalized disease and up to 50 percent of those with the ocular form. Muscle specific kinase antibodies are found in about 3-6 percent of patients and LRP-4 antibodies even more rarely.
"Additional diagnostic studies may include electromyography (EMG), a test that records electrical activity in skeletal muscles. A specialized test usually performed only at academic medical centers called a Single Fiber Electromyography (SFEMG) exam is highly sensitive for detecting the abnormalities of MG. In addition, advanced imaging techniques may be conducted to help detect tumors of the thymus. Such studies may include computed tomography (CT) scanning or magnetic resonance imaging (MRI) of the mediastinum, which is the space between the lungs that contains the thymus and several other bodily structures. During CT scanning, a computer and x-rays are used to create a film showing cross-sectional images of internal structures. During MRI, a magnetic field and radio waves create detailed cross-sectional images of certain organs and tissues."
Sometimes physicians will do the Ice Test as part of the overall evaluation of a potential MG patient. "The ice pack test involves placing a cold pack across the eyes for 10 minutes and then determining if eye lid droop has significantly improved. The rest test involves a patient closing their eyelids for 30 minutes and again assessment for improved lid position or eye movement is made. For all these tests there can be “false negatives” in which a patient with disease does not show improvement with the testing."
In the past, diagnostic studies for MG included testing known as the Tensilon test, where an "intravenous injection of a drug that rapidly inhibits the action of an enzyme involved in breaking down acetylcholine, allowing the neurotransmitter to repeatedly interact with available acetylcholine receptors (edrophonium or Tensilon test). In those with the disorder, anticholinesterase testing of weak muscle groups temporarily restores muscle strength. The drugs edrophonium or neostigmine may be used during such testing." This test is no longer regularly used.
All information quoted from NORD is available here: https://rarediseases.org/rare-diseases/myasthenia-gravis/
Here is some additional information about MG Diagnostics, as explained by the MGFA, below:
Electromyography
Repetitive Nerve Stimulation (RNS)
The amplitude of the compound muscle action potential (CMAP) elicited by repetitive nerve stimulation is normal or only slightly reduced in patients without MG. The amplitude of the fourth or fifth response to a train of low frequency nerve stimuli falls at least 10% from the initial value in myasthenic patients. This decrementing response to RNS is seen more often in proximal muscles, such as the facial muscles, biceps, deltoid, and trapezius than in hand muscles. A significant decrement to RNS in either a hand or shoulder muscle is found in about 60% of patients with myasthenia gravis.
Single Fiber EMG (SFEMG)
Voluntary SFEMG is done with the patient making minor contraction of the muscle with the physician using either a standard single fiber electrode or a concentric needle EMG electrode with the smallest recording surface. The third technique, axonal micro-stimulation, requires the terminal nerve branch to be activate with a small amount of electrical current while recording with the electrode. All of the techniques are technically demanding. Each have specific normative values to which the patient’s study can be compared if the same methodology is used. The latter technique is very useful in sedated infants and children.
Comparison of Diagnostic Techniques
Intravenous edrophonium chloride is often diagnostic in patients with ptosis or ophthalmoparesis, but is less useful when other muscles are weak. Elevated serum concentrations of AChR binding and probably MuSK antibodies virtually assures the diagnosis of myasthenia gravis, but normal concentrations do not exclude the diagnosis. Repetitive nerve stimulation confirms impaired neuromuscular transmission but is not specific to myasthenia gravis and is frequently normal in patients with mild or purely ocular disease. The measurement of jitter by SFEMG is the most sensitive clinical test of neuromuscular transmission and is abnormal in almost all patients with myasthenia gravis. A normal test in a weak muscle excludes the diagnosis of myasthenia gravis, but an abnormal test can occur when other motor unit disorders cause defects in neuromuscular transmission."
According to the MGFA "The diagnosis of MG is often delayed months or even years (in the mildest cases). The unusual distribution and fluctuating symptoms often suggests psychiatric disease. Patients with drooping eyelids, double vision and difficulty with speech or swallowing symptoms suggest intracranial pathology and often lead to an evaluation for stroke, brain tumor or multiple sclerosis. Patients with anti-MuSK-antibody positive MG may have focal or regional weakness and muscle atrophy that are more suggestive of motor neuron or muscle membrane (myopathy) disease."
For more Clinical / Scientific Overview of MG from MGFA, visit their site:
https://myasthenia.org/Professionals/Clinical-Overview-of-MG
For patients (and their providers) who suspect the patient may have SERONEGATIVE MG (meaning their blood tests do not show antibodies related to MG), I encourage you to visit the MGFA's Seronegative MG Resource Center: https://myasthenia.org/MG-Education/The-Seronegative-MG-Resource-Center
Finding a Neuromuscular Specialist
The first step towards diagnosis of MG or any other Neuro-Muscular Disease (NMD), is discussing your symptoms with your PCP (Primary Care Physician) and getting a preliminary exam. Then you will want to get a referral to a Neurologist, but NOT just any neurologist-- a Neuromuscular Specialist. You will need to be examined by a Neuromuscular Disease (NMD) Specializing Neurologist, and undergo blood tests and specialized testing. How can you find one of these Neuromuscular Specialists? I have a few recommendations!
There are essentially 2 different organizations that I found the most helpful when searching for a local Neurologist who specializes in neuromuscular diseases. I have personally found my own NMD Specialists through both of these organizations, including the one that helped me get the correct diagnosis of MG, after 7 years of trying to get an accurate diagnosis. My experience as a patient in an MDA Care Center was wonderful.
1) The MDA (Muscular Dystrophy Association) provides excellent info about MG and all types of Muscular Dystrophy diseases. THE MDA has a searchable database to locate their nearest MDA Centers which provide a multidisciplinary approach towards NMD care that includes Neurology, Pulmonary, Physical Therapy and other disciplines. The MDA also has advocates who can help you find a NMD Specialist affiliated with an MDA Center. The MDA has many different ways to get involved and share in support with other MG patients as well as those with different types of Muscular Dystrophy. Check out their website for more info.
You can access the MDA Care Center DATABASE here:
https://www.mda.org/care/mda-care-centers
If you're looking for one-on-one assistance, the National MDA Resource Center is available Monday through Friday 9 am to 5 pm CST by phone at 1-833-ASK-MDA1 (1-833-275-6321) or email at ResourceCenter@mdausa.org.
2) The MGFA (Myasthenia Gravis Foundation of America), which provides excellent information about all things Myasthenia, as well as a searchable database of MG Specialists across the United States, through their "MGFA Partners in MG Care" program. According to MGFA "The MGFA Partners in MG Care cohort is comprised of providers who have an interest in treating MG patients and are committed to making life better for those living with MG." The MGFA also has advocates who can help you locate a NMD Specialist. In addition, the MGFA has free monthly MG-focused support groups where you can meet other MG patients and ask for their recommendations. Check out their website for more info.
You can access the MGFA Partners in MG Care Program here:
https://myasthenia.org/Professionals/MGFA-Partners-in-MG-Care
You can access the MGFA Partners in MG Care Program DATABASE here:
https://myasthenia.org/Physician-Referral-List
THE NEXT STEPS IN CHOOSING YOUR NMD/MG SPECIALIST:
Get personal recommendations! After searching both organizations' sites to compile a list of potential providers. Turn to MG community members for their personal recommendations on local providers. You can find other patients with MG in many different patient support groups through MDA/MGFA, and on Facebook and other social media. Take notes. Then cross-reference your list, and highlight the providers that come highly recommended. Finally, reach out to the providers of interest to ask 1) if they are accepting new patients, 2) take your insurance, and 3) find out when their next available appointment is. This can help you narrow down your search and choose a provider that will be a good match for you.
Preparing for your appointment, it's important to bring ALL your relevant medical records, symptom tracker info, photos and videos of symptoms in action. Both the MDA and MGFA offer tools to assist with staying organized. Check out their websites for more info.
The MDA Toolkit:
https://www.mda.org/care/mda-toolkit
Myasthenia Gravis Treatment Options
There is no cure for MG to date. Thankfully, there a number of treatment options available for treating Myasthenia Gravis. Each MG patient is different, not only regarding their antibody subtype, but with their other aspects of health, co-existing or pre-existing health conditions, allergies, and predisposition towards potential side effects or adverse effects from certain types of treatments. The informed decision about which treatment options are right for you, will come from you and your Neuromuscular Specialist (Neurologist), with input from your PCP (Primary Care Provider), and other providers that are a part of your healthcare team. While asking others about their own patient experiences with their treatment plans can be helpful to learn about the different treatments, it should not be taken as medical advice. Always consult with your healthcare providers regarding your treatment plan and care.
To learn more about what treatment options are currently available, please visit the following websites:
An overview of MG Treatments via MGFA:
https://myasthenia.org/Newly-Diagnosed/Treatment-Strategy
For more detailed info about specific treatments, in handy brochures visit:
https://myasthenia.org/MG-Education/Learn-More-About-MG-Treatments/MG-Brochures
An overview of MG treatments via MDA:
https://www.mda.org/disease/myasthenia-gravis/medical-management
An overview of MG Treatments via NORD:
https://rarediseases.org/rare-diseases/myasthenia-gravis/#standard-therapies
MG Clinical Trials
There are ongoing and new clinical trials for MG therapies. The MGFA maintains an up-to-date and well-informed list of MG Clinical Trials. Feel free to research all clinical trial options, to share with your Neurologist (NMD or MG Specialist) and healthcare team. Every drug in development or clinical trial contains potential risks and benefits which should be discussed with your healthcare team, and taken into consideration with you and your loved ones before making a decision to enroll.
For up-to-date MG Clinical Trial info, go to the MGFA site, here:
https://myasthenia.org/Research/Clinical-Trial-Opportunities
National Organization for Rare Disorders (NORD) also provides useful information to learn more about clinical trials (as copied from NORD's site, below):
Investigational Therapies
Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov. All studies receiving U.S. Government funding, and some supported by private industry, are posted on this government web site.
For information about clinical trials being conducted at the NIH Clinical Center in Bethesda, MD, contact the NIH Patient Recruitment Office:
Toll free: (800) 411-1222
TTY: (866) 411-1010
Email: prpl@cc.nih.gov
Some current clinical trials also are posted on the following page on the NORD website:
https://rarediseases.org/for-patients-and-families/information-resources/news-patient-recruitment/
For information about clinical trials sponsored by private sources, contact: www.centerwatch.com
For information about clinical trials conducted in Europe, contact: https://www.clinicaltrialsregister.eu/
Resources
RareConnect offers a safe patient-hosted online community for patients and caregivers affected by this rare disease. For more information, visit www.rareconnect.org
NORD Member Organizations
- Muscular Dystrophy Association
- 161 N. Clark
- Suite 3550
- Chicago, IL 60601 USA
- Phone: (520) 529-2000
- Toll-free: (800) 572-1717
- Email: ResourceCenter@mdausa.org
- Website: http://www.mda.org/
- Myasthenia Gravis Foundation of America, Inc.
- 355 Lexington Ave 15th Floor
- New York, NY 10017-6603
- Phone: (212) 297-2156
- Toll-free: (800) 541-5454
- Email: mgfa@myasthenia.org
- Website: http://www.myasthenia.org
- https://myasthenia.org/Research/Clinical-Trial-Opportunities
The information above was copied from NORD, available in the Investigational Therapies section, here: https://rarediseases.org/rare-diseases/myasthenia-gravis/#standard-therapies
CAUTIONARY DRUGS & Contraindications with MG
There are a number of drugs and treatments that are considered dangerous for MG patients to take. These drugs can cause worsening of MG symptoms, which could lead to MG Crisis. Some drugs and treatments like Botox have BLACK BOX WARNINGS against use with MG patients. PLEASE, if you are an MG patient or caregiver, familiarize yourselves with the lists of Cautionary Drugs, and inform all of your healthcare providers including Dental and Vision, and ER staff by sharing this list. The MGFA provides a comprehensive list of these Cautionary Drugs, that is up-to-date. Please check out their page and DOWNLOAD the handout version. KEEP A COPY of this handout accessible from your phone, or printed in your personal belongings. You never know when you will need urgent access to this important info.
To Stay Up to Date, please visit the MGFA's page on Cautionary Drugs here:
https://myasthenia.org/Newly-Diagnosed/Cautionary-Drugs-for-MG-Patients
Also be sure to download their helpful handout by the same name!
https://myasthenia.org/Portals/0/Cautionary_Drugs_2020_1.pdf
MG Exacerbation, Crisis & EMERGENCY Management
The information in this section was copied/pasted from the MGFA site, and can be found here:
https://myasthenia.org/MG-Community/-MG-Emergencies
It is important for you to seek care as soon as you feel an MG crisis coming on to ensure proper medical intervention. If you are feeling short of breath, it is very important to call 911 or get medical help immediately.
MG Exacerbations & Crisis
Living with myasthenia gravis (MG) can be difficult at times, and it is important to be prepared for the future. Knowledge is key to understanding how to deal with a crisis or exacerbation - enabling you to be your own best advocate. An exacerbation, or flare, is when your symptoms increase in frequency and/ or become more severe. It is important to contact your doctor and tell him about any change in symptoms or issues. Your physician can intervene to ensure that the exacerbation does not become a crisis.
Complications can occur due to a wide variety of reasons and situations or treatments - causing your MG to flare and triggering an MG crisis. A crisis may occur suddenly or gradually, so you should call 911 as soon as possible.
Learn more about MG Crisis and Emergency Management here:
https://myasthenia.org/Professionals/Emergency-Management
MG Crisis vs. MG Flare
MYASTHENIC CRISIS affects a small percentage of people with MG. It occurs when the respiratory muscles get too weak to move enough air in and out of the lungs. The person with MG is unable to breathe and a machine (ventilator) is necessary to help them breathe. The machine may do this through a tube into the airway (endotracheal intubation) or a tight-fitting mask on the face (BiPAP). Myasthenic crisis involves the respiratory muscles so it is different from an MG flare (exacerbation).
MG FLARE or “exacerbation” occurs when there is worsening of some or all muscles throughout the body, but assistance is not required for breathing. MG flares vary from person to person but may include worsened double vision, slurred speech, increased arm weakness, falling, unsteady walking, and difficulty swallowing. Many muscles throughout the body may weaken during an MG exacerbation but myasthenic crisis refers specifically to severe, potentially life-threatening weakness of respiratory muscles. Myasthenic crisis typically develops after days to weeks of worsening symptoms. Rarely, MG crisis can develop more quickly. It is important to seek medical care immediately when symptoms of possible MG crisis are present.
Be Prepared BEFORE an MG Crisis!
The ability to stay ahead of the game before it becomes a crisis is crucial. You should have materials and information available BEFORE an MG crisis occurs so you or your caregiver can act fast. Keep materials or MG information close by and create a package of important information to take to your doctor or the emergency room at a hospital. You can stay prepared by compiling materials or downloads below.
Pack the Essentials – Pack a set of essentials in a backpack or carry on case with things that you need, including printouts of the downloaded materials and lists below. Include toiletries such as toothbrush and toothpaste, deodorant, comfortable clothes including underwear, a neck pillow, headphones and extra-long phone charger. Bring your treatment medicine if you can as well as a list of all medicines.
Cautionary Drugs List - Certain medications and over the counter preparations may cause worsening of MG symptoms. Remember to tell any doctor or dentist about your MG diagnosis. It is important to check with your doctor before starting any new medication including over the counter medications or preparations. DOWNLOAD the LIST of CAUTIONARY DRUGS and have it available for Emergency Medical Professionals or EMTs.
Emergency Alert Card – This helpful wallet card can be printed out and presented to medical professionals so they know you have myasthenia gravis. The card will also help EMTs and medical providers understand how to treat your MG crisis. You can DOWNLOAD the CARD to print out. This is the Spanish Language Version HERE.
List of all treatments and medicines – Type or write out a list of ALL medicines you take, including your MG treatments including dosage, unit amounts, frequency, and drug store.
Emergency Phone Numbers – Have an accessible list of phone numbers and email addresses for your caregivers, medical professionals including nurses, neurologists, and doctors, as well as your emergency contacts such as spouse, family members, and close friends. Make sure you have contact information for anyone who can help you in an emergency.
Print out MG Emergency Brochures – MGFA offers two emergency brochures for first responders and caregivers on the myasthenia.org website. Print those two brochures and have those with you in the event of an MG crisis to show EMTs and medical professionals. These guidelines could save your life. You can find them below.
Download the New MyMG Mobile App – The new mobile app enables patients and caregivers to keep track of symptoms and their severity as well as treatments. Use the app on a daily basis to track your symptoms and show the symptom and treatment graphs and history to your doctor, neurologist, or emergency professionals. You can DOWNLOAD the MyMG Mobile App in ADVANCE HERE.
MGFA Patient Packs – We offer printed packs of information that include these materials and other printed brochures. If you would like to request a hard copy printed pack, YOU CAN COMPLETE THE FORM HERE.
Important info about MG Crisis and Emergency Management:
https://myasthenia.org/Professionals/Emergency-Management
***
A note from Aimee:
REMEMBER: It is ALWAYS better to contact your provider and seek immediate healthcare intervention any time you are experiencing significantly worsening MG symptoms, or difficulty breathing, as described above. MG Flares/Exacerbation effect MG patients differently. For some patients in an MG Flare, they may experience worsened weakness with their arms and legs, while others may experience it with their neck and facial muscles. MG fluctuates, and it's important to remember it can happen quickly. That's why being prepared in advance is recommended.
Check out my video clip (below) on "What an MG Exacerbation Looks like!" Just a quick example from one exacerbation I experienced that went from what you see in the video, to complete eye closure, loss of voice, and difficulty breathing which was a borderline MG Crisis. I had to go to the ER for urgent assistance.
Myasthenia Gravis Support & The MG Community
There are thousands of patients living with Myasthenia Gravis around the world. But depending on where you live, and your abilities, you may have a hard time connecting with others who TRULY understand life with MG (other MGers)! MG Support Groups through social media platforms like Facebook and Instagram have been a wonderful resource for me as a patient. I have made hundreds of friends through these groups over the years. I have also made friends with other MGers, through the MGFA and MDA and other patient organizations and platforms that are bringing together MG patients, such as Conquer Myasthenia Gravis, More Than MG, The MG Holistic Society, MG United, MGA and more. I am an Admin for an MG Positive Support Group for LRP4, Agrin & Titin antibodies patients, on Facebook. The focus of the group is specific to topics and issues pertaining only to those ultra-rare antibodies. I encourage you to seek out support and build friendships with other MG patients. We are a tight-knit community, and welcoming to patients who are new to the MG world.
MGFA MG Friends Program
The MGFA 's "FREE peer-to-peer phone support program helps ensure that you have the information you need to face this diagnosis and improve your quality of life. MGFA will match you with an MG Friend who has similar needs so you can obtain information that closely matches your current situation. You can contact that person and engage in live, one-on-one phone or Zoom conversations and build a productive MG friendship."" To learn more about this program or to sign up, go here: https://myasthenia.org/MG-Community/MG-Friends-Program
In the USA? Find MGFA State-based Support Groups: https://myasthenia.org/MG-Community/Find-MG-Support-Groups
MDA Peer Connections Program
To learn about the MDA Peer Connections Program, check out this article:
For more info about MDA Peer Connections program or would like to complete the form to make a connection, contact MDA’s Resource Center at (833) ASK-MDA1 or email ResourceCenter@mdausa.org.
If you're looking for one-on-one assistance or resources, the National MDA Resource Center is available Monday through Friday 9 am to 5 pm CST by phone at 1-833-ASK-MDA1 (1-833-275-6321) or email at ResourceCenter@mdausa.org.
NORD has a great searchable database for finding Patient Organizations... Check it out here:
https://rarediseases.org/for-patients-and-families/connect-others/find-patient-organization/
For additional info https://myasthenia.org/Newly-Diagnosed/Resources-Assistance
There are many other great MG patient organizations across the USA, such as the MGA Myasthenia Gravis Association, and the MG Holistic Society.
EBE's Rare Disease & Chronically Sick/Disabled Support Groups
There is an OPEN ENROLLMENT for all patients with MG, and/or other Rare Diseases, Chronic Illnesses or Disabilities, who wish to EMPOWER their lives, gain support and make friends with others just like them in our Coaching Groups! Our Empowering Support and Coaching Groups are different from other disease-focused support groups which often times are not as supportive or empowering as we'd like. Our coaching groups provide actual coaching! We want to help you set goals and achieve them. Make positive changes. Transform your experiences or perspective. Find Resilience and renewed hope.
EBE has Support Groups that welcome those living with MG and other rare diseases, chronic illness and/or disabilities. EBE offers Support Groups for Caregivers and Healthcare Workers too. We have Patient Advocacy Coaching, which is a very different type of coaching, may be of interest. Check out our Support Group & Coaching pages to learn more! Everybody Empowered, LLC also offers 1:1 Individual Coaching, Couples/Family Coaching, Young Adult Coaching, and Customized Coaching.
Also, if you are interested in having EBE host a private/closed OR open (larger enrollment) MG Coaching Group, contact us with your inquiry. We would be happy to customize a Group for you, your patients, or organization, or 5+ MG patients/friends/family. Let us know how we can empower you!
If you are interested in joining EveryBody Empowered's Unique Support & Coaching Groups, scroll down on this page to get a sneak peak, or click the button below to head over to our Support Groups page:
Myasthenia Gravis Advocacy - TIME to GET INVOLVED!
Are you interested in raising awareness, donating, fundraising, volunteering or participating in MYASTHENIA GRAVIS ADVOCACY & events? Here are some wonderful organizations to check out:
The Muscular Dystrophy Association (MDA)
https://www.mda.org/get-involved
https://www.mda.org/get-involved/become-a-volunteer
The Myasthenia Gravis Association of America (MGFA)
https://myasthenia.org/Make-an-Impact
https://myasthenia.org/Make-an-Impact/Advocate-for-Patients
The Rare Disease Legislative Advocates (via the EveryLife Foundation)
https://everylifefoundation.org/rare-advocates/
The EveryLife Foundation
https://everylifefoundation.org/
The National Organization for Rare Disorders (NORD)
The Rare Action Network (RAN) via NORD
https://rarediseases.org/advocate/take-action-locally/join-rare-action-network/
Conquer Myasthenia Gravis
https://www.myastheniagravis.org/
More Than MG (via Alexion Pharmaceuticals)
The MG Holistic Society
https://mgholisticsociety.org/
MG United (via argenx Pharmaceuticals)
https://www.mg-united.com/what-is-myasthenia-gravis
The Myasthenia Gravis Hope Foundation
https://www.mg-united.com/what-is-myasthenia-gravis
The Myasthenia Gravis Association
For any MG or Rare Disease Patient Organizations interested in being listed here, collaboration, becoming a Partner or other inquiry, please contact us!
An MG Exacerbation caught on video... YouTube gave me an AWE
What a Myasthenia Gravis Exacerbation looks like!
This video was taken so I could show you exactly how drastic Myasthenia Gravis (MG) can be when causing severe muscle weakness in the facial muscles. MG can make me turn into a Picasso painting (LOL)-- with one eyebrow up and one down, one eye lid open and the other closed, a crooked smile. Even drooping cheeks and under eyes! I have had to learn to LOVE MYSELF enough to accept me and embrace my beauty-- even when I am looking so asymmetrical. Comparing myself to a Picasso painting is better than comparing myself to road kill. Don't you agree? LOL. While I have a sense of humor about how I look with MG, which helps me cope-- this exacerbation got worse by the minute and I ended up needing to go to the Emergency Room right after filming. Myasthenia Gravis CAN BE GRAVE, when symptoms worsen. When your ability to chew/swallow/talk gets worse, or you experience neck-drop, are unable to walk, or have any difficulty breathing-- that is an EMERGENCY and you need to act quickly. MG Crisis can develop quickly from an Exacerbation, so learn to pay attention to your body's signs and seek medical help urgently when needed. Life saving measures can be taken for an MG patient in crisis, but Emergency medical professionals must act quickly.
Aimee's Myasthenia Gravis Advocacy in Action!
Aimee is an Ambassador & Advocate for the MDA (Muscular Dystrophy Association)
Aimee shares her gems on finding strength and resilience, in an interview by Conquer MG
Aimee shares her gems on finding strength and resilience, in an interview by Conquer MG
From the Muscular Dystrophy Association.
Aimee shares her gems on finding strength and resilience, in an interview by Conquer MG
Aimee shares her gems on finding strength and resilience, in an interview by Conquer MG
Aimee shares her gems on finding strength and resilience, in an interview by Conquer MG
From Conquer Myasthenia Gravis' September 2022 Newsletter, pg 11.
Aimee participating in Myasthenia Gravis & Patient Advocacy:
Aimee contributes valuable information as a Panelist at the MDA Engage "MG Symposium" on 10/19/2022.
Aimee shares her experiences living with MG, and gives some recommendations for tackling challenging issues with providers and getting the most out of patient appointments. Skip to 20:53 to listen to the Panel Discussion.
Aimee Zehner was interviewed by fellow MG patient, Advocate & Coach Sarah Bolton, on behalf of Conquer Myasthenia Gravis, to discuss how she finds strength one day at a time while living with MG!
Aimee discusses life and the medical challenges she faces while living with the ultra-rare subtype of MG, called LRP4. Aimee shares words of encouragement and empowerment for others to find strength and resilience in facing their own greatest obstacles.
EBE Support Groups
Aimee discusses her MG Diagnostic Odyssey in QUEST Magazine
Check out Aimee's insights on Patient Diagnostic Journey, featured in this article from MDA'S QUEST
Check out Aimee's insights on Patient Diagnostic Journey, featured in this article from MDA'S QUEST
Check out Aimee's insights on Patient Diagnostic Journey, featured in this article from MDA'S QUEST
From the Muscular Dystrophy Association.
A HIGHLIGHT from the article (below)
Check out Aimee's insights on Patient Diagnostic Journey, featured in this article from MDA'S QUEST
Check out Aimee's insights on Patient Diagnostic Journey, featured in this article from MDA'S QUEST
From the Muscular Dystrophy Association.
Here is the Article, pg 1:
Check out Aimee's insights on Patient Diagnostic Journey, featured in this article from MDA'S QUEST
Here is the Article, pg 1:
From the Muscular Dystrophy Association.
Article pg 2
Article pg 2
Here is the Article, pg 1:
From the Muscular Dystrophy Association.
Article pg 3
Article pg 2
Article pg 3
From the Muscular Dystrophy Association.
Want to create a Customized Patient Advocacy Coaching Group?
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Our Support & Coaching Groups are truly One of A Kind! Head over to our Support Groups page to learn more about what each unique group has to offer.
Aimee & fellow Rare Disease Legislative Advocates speaking with Congressmen & Senators re: legislation impacting the Rare Disease Community.
Aimee Zehner, Rare Disease Advocate, speaking on behalf of Myasthenia Gravis patients (especially LRP4+, and other rare MG serotypes) about the needs of our community with regard to important legislation before Congress and The Senate!
Interested in having Aimee Zehner advocate for your cause?
Are you interested in having Aimee Zehner advocate for your institution, organization, company or group for a specific rare disease/chronic illness, accessibility or healthcare issue, rare disease related legislation, or other important cause; or need a Spokesperson to fundraise & help raise awareness? Contact us!
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All content found on this website [everybodyempowered.com] is for informational purposes only, and is subject to change. EveryBody Empowered, LLC does its best to provide up-to-date and reliable content (such as information, links, resources), but we can not predict when changes will occur that require us to update / change or remove content from our website. Sometimes scientific, medical or world discoveries are made that changes what we thought we knew (such as a new theory, disease causation, a law, or societal norm). Also, "cancel culture." We will do our best to learn about and reflect necessary changes in the content we provide, AND in who or what we recommend or support as resources. We apologize for any inconvenience this may cause. Please notify us by email if you notice any content that requires attention or updates, or content that goes missing that you were hoping to save, or that you think should be added. Content on our website is subject to change at our discretion. Also, please remember that EveryBody Empowered, LLC and Aimee Zehner do NOT provide medical, psychological, health, financial or legal advice, or therapy. EveryBody Empowered, LLC and Aimee Zehner do NOT provide diagnosis, diagnostics, treatments, medicine, medical, financial or legal services. EveryBody Empowered, LLC website content / information is not intended to replace content / information found on reputable primary sources (such as the official websites for The United States National Institutes of Health / NIH, or National Organization for Rare Disorders / NORD), or from your own providers or licensed professionals. Please discuss all personal medical or psychological health, financial, or legal issues, questions or concerns with your own healthcare team, appropriate licensed provider or professional. Thank you.
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