Myasthenia Gravis - What Is It?
Myasthenia Gravis comes from the Greek and Latin words meaning "grave muscular weakness." The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. The prevalence of MG in the United States is estimated to be about 20/100,000 population. However, MG is probably under diagnosed and the prevalence may be higher. Myasthenia Gravis occurs in all races, both genders, and at any age. MG is not thought to be directly inherited nor is it contagious. It does occasionally occur in more than one member of the same family.
The voluntary muscles of the entire body are controlled by nerve impulses that arise in the brain. These nerve 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; this space is 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. In MG, there is 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. For reasons not well understood, the immune system of the person with MG makes antibodies against the receptor sites of the neuromuscular junction. Abnormal antibodies can be measured in the blood of many people with MG. 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
Symptoms of MG
Some common symptoms of MG are drooping eyelid (ptsosis), blurred or double vision, slurred speech, difficulty chewing and/or swallowing, weakness in the arms and legs, chronic muscle fatigue and difficulty breathing.
MG may affect any muscle that is under voluntary control. Certain muscles are more frequently involved and these include the ones that control eye movements, eyelids, chewing, swallowing, coughing and facial expression. Muscles that control breathing and movements of the arms and legs may also be affected. Weakness of the muscles needed for breathing may cause shortness of breath, difficulty taking a deep breath and coughing.
The muscle weakness of MG increases with continued activity and improves after periods of rest. The muscles involved may vary greatly from one patient to the next. Weakness may be limited to the muscles controlling eye movements and the eyelids. This form of myasthenia is referred to as ocular MG. In its severest form, MG involves many of the voluntary muscles of the body, including those needed for breathing. The degree and distribution of muscle weakness for many patients falls in between these two extremes. When the weakness is severe and involves breathing, hospitalization is usually necessary.
MG may affect any muscle that is under voluntary control. Certain muscles are more frequently involved and these include the ones that control eye movements, eyelids, chewing, swallowing, coughing and facial expression. Muscles that control breathing and movements of the arms and legs may also be affected. Weakness of the muscles needed for breathing may cause shortness of breath, difficulty taking a deep breath and coughing.
The muscle weakness of MG increases with continued activity and improves after periods of rest. The muscles involved may vary greatly from one patient to the next. Weakness may be limited to the muscles controlling eye movements and the eyelids. This form of myasthenia is referred to as ocular MG. In its severest form, MG involves many of the voluntary muscles of the body, including those needed for breathing. The degree and distribution of muscle weakness for many patients falls in between these two extremes. When the weakness is severe and involves breathing, hospitalization is usually necessary.
MG and ME
I was very depressed, angry, afraid and frustrated often during the first year or so after my diagnosis. After a while I began to learn that I was going to have to live with MG and have a good life too.I turned to my faith. As a Christian I believe that God doesn't cause illness but rather allows it to happen. I also believe in prayer and support of fellow believers. My church family and my Pastor have helped me in too many ways to mention here.
I began to not focus on myself. I found things I could do to feel useful again. I became involved with two prayer ministries. I joined eBay groups and "met" people online. I maintained friendships by calling people, inviting them over to visit and reminding them that I might have to back out if I didn't feel well.
Then I found DOUA - the Disabled Online Users Association. I have gained so much confidence from being a member there. After being bedridden then pretty much home bound this group opened the world to me! I'm now a mentor there and love it. Because of the help of DOUA I with my husband sell on eBay under the name ShawnsBidness.
I also love going to Walt Disney World. The MDA bought a scooter for me. I use that to go to the parks. I avoid the heat of the day and know all of the places to hide out in air conditioning if I feel that I'm getting over-heated. Disney makes me feel like a kid again. And having fun is just what the doctor ordered!
Invisible Illness
MG is one of those invisible illnesses. Unless I'm weak enough to use my scooter or cane you most likely wouldn't know that I have a serious chronic illness (along with 4 others too).
Diagnosing MG
There are many disorders that cause weakness. In addition to a complete medical and neurological evaluation, a number of tests may be used to establish a diagnosis of MG. A blood test for the abnormal antibodies can be performed to see if they are present. Electromyography (EMG) studies can provide support for the diagnosis of MG when characteristic patterns are present. The edrophonium chloride (Tensilon®) test is performed by injecting this chemical into a vein. Improvement of strength immediately after the injection provides strong support for the diagnosis of MG. Sometimes all of these tests are negative or equivocal in someone whose story and examination still seem to point to a diagnosis of MG. The positive clinical findings should probably take precedence over negative confirmatory tests.
MG Links
- Brain Foggles
- My blog about living with chronic illnesses including MG.
- My Chronic Life
- Living my life to the fullest while having multiple Chronic Illnesses including MG.
- MGFA - MG Foundation of America
- Myasthenia Gravis Foundation of America provides patient, family and medical professional information. There are support groups in many areas of the US. This group raises funds for medical research. There are many free publications you can get from their website.
- MDA
- The MDA also raises money for research. Their clinics treat people with MG, provide other services such as assistive devices and summer camp for children with MG and other neuromuscular diseases.
- But You Don't Look Sick
- A web site devoted to people with invisible illnesses.
- DOUA - Disabled Online Users Association
- The Disabled Online Users Association (DOUA) is a non-profit 501(c)(3) organization founded in 1998 with the sole purpose of bringing the online world of business to the disabled.
Treating MG
There is no known cure for MG, but there are effective treatments that allow many-but not all-people with MG to lead full lives. Common treatments include medications, thymectomy and plasmapheresis. Spontaneous improvement and even remission may occur without specific therapy.
Medications are most frequently used in treatment. Anticholinesterase agents (e.g., Mestinon®) allow acetylcholine to remain at the neuromuscular junction longer than usual so that more receptor sites can be activated. Corticosteroids (e.g., prednisone) and immunosuppressant agents (e.g., Imuran®) may be used to suppress the abnormal action of the immune system that occurs in MG. Intravenous immunoglobulins (IVIg) are sometimes used to affect the function or production of the abnormal antibodies also.
Thymectomy (surgical removal of the thymus gland) is another treatment used in some patients. The thymus gland lies behind the breastbone and is an important part of the immune system. When there is a tumor of the thymus gland (in 10-15% of patients with MG), it is always removed because of the risk of malignancy. Thymectomy frequently lessens the severity of the MG weakness after some months. In some people, the weakness may completely disappear. This is called a remission. The degree to which the thymectomy helps varies with each patient.
Plasmapheresis, or plasma exchange, may be useful in the treatment of MG also. This procedure removes the abnormal antibodies from the plasma of the blood. The improvement in muscle strength may be striking, but is usually short-lived, since production of the abnormal antibodies continues. When plasmapheresis is used, it may require repeated exchanges. Plasma exchange may be especially useful during severe MG weakness or prior to surgery.
Treatment decisions are based on knowledge of the natural history of MG in each patient and the predicted response to a specific form of therapy. Treatment goals are individualized according to the severity of the MG weakness, the patient's age and sex, and the degree of impairment.
Medications are most frequently used in treatment. Anticholinesterase agents (e.g., Mestinon®) allow acetylcholine to remain at the neuromuscular junction longer than usual so that more receptor sites can be activated. Corticosteroids (e.g., prednisone) and immunosuppressant agents (e.g., Imuran®) may be used to suppress the abnormal action of the immune system that occurs in MG. Intravenous immunoglobulins (IVIg) are sometimes used to affect the function or production of the abnormal antibodies also.
Thymectomy (surgical removal of the thymus gland) is another treatment used in some patients. The thymus gland lies behind the breastbone and is an important part of the immune system. When there is a tumor of the thymus gland (in 10-15% of patients with MG), it is always removed because of the risk of malignancy. Thymectomy frequently lessens the severity of the MG weakness after some months. In some people, the weakness may completely disappear. This is called a remission. The degree to which the thymectomy helps varies with each patient.
Plasmapheresis, or plasma exchange, may be useful in the treatment of MG also. This procedure removes the abnormal antibodies from the plasma of the blood. The improvement in muscle strength may be striking, but is usually short-lived, since production of the abnormal antibodies continues. When plasmapheresis is used, it may require repeated exchanges. Plasma exchange may be especially useful during severe MG weakness or prior to surgery.
Treatment decisions are based on knowledge of the natural history of MG in each patient and the predicted response to a specific form of therapy. Treatment goals are individualized according to the severity of the MG weakness, the patient's age and sex, and the degree of impairment.
Prognosis - Living with MG
The current treatments for MG are sufficiently effective that the outlook for most patients is bright. Although the treatments will not cure MG, most patients will have significant improvement in their muscle weakness. In some cases, MG may go into remission for a time, during which no treatment is necessary. There is much that can be done, but still much to understand. New drugs to improve treatments are needed. Research plays an important role in finding new answers and treatments for MG.
There are books about MG!
Myasthenia Gravis and Related Disorders (Current Clinical Neurology)
Amazon Price: $145.00 (as of 11/27/2009) 
Attacking Myasthenia Gravis
Amazon Price: (as of 11/27/2009)
The Official Patient's Sourcebook on Myasthenia Gravis: A Revised and Updated Directory for the Internet Age
Amazon Price: $28.95 (as of 11/27/2009)
Myasthenia Gravis: An Illustrated History
Amazon Price: (as of 11/27/2009)
The Mysterious Illness-Myasthenia Gravis
Amazon Price: $15.49 (as of 11/27/2009)
My MG Diagnosis
I began having symptoms of MG the same week I turned 40. I remember distinctly feeling my right eyelid twitch then feel weak. It was really bad at the end of the work day. If I had toothpicks to hold up my eye I would have used them!
Sometimes I'd actually hold my eyelid up with my hand so I could drive, but no one could really see my eyelid drooping. It was just a horrible feeling of weakness.
As the week progressed my eyelid became worse. Then it felt like my whole forehead was weak. I became so fatigued that I was afraid I'd fall asleep with my toddler unattended. I'd pray for my husband to come home so I could sleep.
What was this strange thing that was happening to me? What doctor should I see about it? I ended up going to a local neurologist. My appointments were always in the morning or early afternoon. So after MRI's, CT scans, blood tests, neurological tests, he was baffled. Until, one day I came in and my eyelid was drooping.
That was enough for him. He put me on a trial dose of Mestinon, only 30 mgs. I was thrilled after my first dose. I began to feel my face muscles getting stronger. The doctor slowly increased my dose. The problem was he had only one other patient with MG and really didn't know how to treat it.
He expected me to dose myself with this very potent medication. That's when I began my search for a doctor who treated MG patients regularly. That's how I came to know the MGFA and MDA.
Sometimes I'd actually hold my eyelid up with my hand so I could drive, but no one could really see my eyelid drooping. It was just a horrible feeling of weakness.
As the week progressed my eyelid became worse. Then it felt like my whole forehead was weak. I became so fatigued that I was afraid I'd fall asleep with my toddler unattended. I'd pray for my husband to come home so I could sleep.
What was this strange thing that was happening to me? What doctor should I see about it? I ended up going to a local neurologist. My appointments were always in the morning or early afternoon. So after MRI's, CT scans, blood tests, neurological tests, he was baffled. Until, one day I came in and my eyelid was drooping.
That was enough for him. He put me on a trial dose of Mestinon, only 30 mgs. I was thrilled after my first dose. I began to feel my face muscles getting stronger. The doctor slowly increased my dose. The problem was he had only one other patient with MG and really didn't know how to treat it.
He expected me to dose myself with this very potent medication. That's when I began my search for a doctor who treated MG patients regularly. That's how I came to know the MGFA and MDA.
Myasthenia Gravis on eBay
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My Chronic Life Blog
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Myasthenia Gravis Research Findings
I found this information on the Muscular Dystrophy website. It's listed under Research.New Details of Acetylcholine Emerge
A group of scientists at the University of Southern California in Los Angeles and the University of California-Los Angeles have described in greater detail than ever before the molecular structure of acetylcholine receptors. These receptors, embedded in the surface of muscle fibers, are docking sites for acetylcholine, which carries signals from the nervous system to the muscles.
Abnormalities in or destruction of these receptors can cause congenital myasthenic syndromes or myasthenia gravis, respectively.
MDA grantee Zuo-Zhong Wang at USC and colleagues, whose findings were the cover story in the August issue of Nature Neuroscience, uncovered two previously unknown features of the acetylcholine receptor: a water-filled cavity inside it and a precisely ordered chain of sugar molecules on its surface.
Highly detailed knowledge of receptor structure is necessary for successful drug design, writes Titia Sixma of the Netherlands Cancer Institute in Amsterdam in an editorial that accompanies the findings. Sixma noted that the new revelations "suggest new avenues of exploration.
Not only is this news promising for MGers it also shows that money donated to the MDA is well spent on research.
Photo courtesy of Mary B. Thorman
VERY IMPORTANT!
The medical information about MG is from the Myasthenia Gravis Foundation of America website.
The personal information is mine and true. My journey with MG has been helped by the MGFA and the MDA. These two organizations have been my lifelines. Finding a neurologist who specializes in MG is the best thing I did. The treatment options I am given are the most up to date and take all of my other conditions into consideration.
I am happy to say that after being diagnosed over 4 years ago and having a thymectomy I am now in a drug induced remission. I must stay on my medications, watch my symptoms (especially in the heat of Florida), don't overdo, learn my limits and keep my faith. I went from being bed-ridden to being much more independent.
There are people that suffer a great deal from MG and I still have my days too but with good medical care there is hope. Make use of your resources and keep up to date on the research. You can live with MG!
Please feel free to contact me about MG. But please do use the websites provided for medical information. Thanks for reading my lens.
The personal information is mine and true. My journey with MG has been helped by the MGFA and the MDA. These two organizations have been my lifelines. Finding a neurologist who specializes in MG is the best thing I did. The treatment options I am given are the most up to date and take all of my other conditions into consideration.
I am happy to say that after being diagnosed over 4 years ago and having a thymectomy I am now in a drug induced remission. I must stay on my medications, watch my symptoms (especially in the heat of Florida), don't overdo, learn my limits and keep my faith. I went from being bed-ridden to being much more independent.
There are people that suffer a great deal from MG and I still have my days too but with good medical care there is hope. Make use of your resources and keep up to date on the research. You can live with MG!
Please feel free to contact me about MG. But please do use the websites provided for medical information. Thanks for reading my lens.
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Please Tell Me What You Think!
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- DragonsTarot DragonsTarot Sep 5, 2008 @ 5:17 pm
- Excellent lens - good info.
I am watching with interest
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- Wendy Wendy May 14, 2008 @ 5:18 pm
- I was searching for myasthenia info and ended up on your blog again :-) I was amused to see a link to my blog and MG.
I have a question for you about your scooter. Can you tell me what you had to do to qualify? Years ago I was stuck in a wheelchair before my MG diagnosis. Once I got on Mestinon and IVIg, I could walk again with the help of my service dog, Zeke.
I live in Lakeland, FL now. My new insurance won't pay for IVIg and the heat sure makes me turn into jello. Some days I can barely walk from bed to couch to bathroom. Forget about outside! I only shop at stores that have electric scooters available. Sometimes that seems tough. I have never seen the inside of the Lakeland Mall and I've been in this area since late 2005. They only have manual wheelchairs...useless for MG.
I love to go to Disney World, but haven't been able to afford to rent an electric scooter there in a couple of years. Sometimes I can get in free with cast members, but I don't get too far.
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- Pat Curry Pat Curry Jan 21, 2008 @ 7:19 am
- You opened my eyes to MG. What great information and links you have provided! You deserve more than 5 stars for this one.
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- Christopher_Scott Christopher_Scott Oct 1, 2007 @ 1:09 am
- Great lens! Lots of great information for all of us. Keep up the hard work. Come over to A DAY OF HOPE
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- Forgiven Forgiven Aug 24, 2007 @ 10:38 pm
- Another 5 * Lens!
God bless
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by ShawnsBidness
I have several chronic illnesses. Most are autoimmune diseases. I'd
like to share some information and hopefully help someone along the
way.
I've com... (more)
like to share some information and hopefully help someone along the
way.
I've com... (more)
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