Welcome
The Myasthenia Gravis Foundation of California’s (MGFC) was founded in 1954.  Its mission is to find a cure for MG by funding cutting edge research and providing services for MG patients through low cost (and, in some cases, free) MG Clinics, Drug Bank and patient support auxiliaries throughout California and Nevada, as well as medical education, information and referrals.


What Is Myasthenia Gravis?
Myasthenia Gravis is a neurological disorder resulting in fluctuating weakness of the voluntary muscle groups, such as those controlling the eyes, face, chewing, swallowing, and talking. Muscles that control breathing and movement of the arms and legs can also be affected. The weakness tends to increase with activity and improve with rest. For example, if you have MG, you may notice during a meal, your jaw muscles become tired and weak, interfering with your ability to chew food.  After you have rested for a while, muscles may become strong again, allowing you to resume eating.

This waxing-and-waning weakness of muscles, worsening with use and improving with rest, is a hallmark of MG.  Typically, there are periods when you notice more symptoms (called an exacerbation) interspersed with periods when your symptoms decrease or disappear (called remission).

The disease most commonly affects muscles that control eye and eyelid movement, so the first symptom may be eyelid drooping and/or blurred or double vision.  Many MG patients start out with this “ocular myasthenia.”  The majority go on to develop weakness in other muscles groups within one or two years.

Myasthenia Gravis affecting multiple muscle groups throughout the body is called generalized MG.  Other common muscle groups to be affected may make it difficult to chew, swallow, smile, shrug, life arms, grip, rise to a stand, or walk up stairs.  When the muscles necessary for breathing are affected, a patient is said to be in myasthenic crisis.  This is a life-threatening situation.

MG affects more than 30,000 Americans of all ethnic groups. The onset can occur at any age. Women are most commonly affected during childbearing years, while men usually develop MG in middle age. MG is not directly inherited, nor is it contagious.

Fortunately, effective treatments have been developed over the past few decades. Neurologists can work with their patients to develop individualized treatments that allow most patients to lead full lives.


What Causes Myasthenia Gravis?
Under normal conditions, nerves direct muscles to work by sending a message through an area called a receptor.  The chemical that delivers the message is called acetylcholine.  When acetylcholine lodges in a nerve receptor, muscles know to contract.  In Myasthenia Gravis, there are fewer acetylcholine receptors than needed.

Myasthenia Gravis is considered to be an autoimmune disorder.  In an autoimmune disease, the body’s antibodies (cells that are supposed to be programmed to fight foreign invaders such as bacteria, viruses or fungi) mistake a part of the body as foreign, resulting in its destruction.  In the case of MG, antibodies attach and destroy acetylcholine receptors needed for muscle contraction.

No one knows exactly what causes the body to begin producing antibodies that destroy acetylcholine receptors.  In some case, the process seems to be related to the thymus gland which helps produce antibodies.  About 15 per cent of all MG patients are found to have a thymoma, a tumor of the thymus.  Although most thymomas are benign, the thymus is usually removed (thymectomy) to prevent potential spread of cancer.  In fact, thymectomy seems to improve symptoms of MG in some patients, even if no tumor is present.

Who Gets Myasthenia Gravis?
Estimates of the number of people affected by MG vary, ranging from five to 14 people per 100,000.

MG occurs in all ethnic groups and both genders. It most commonly affects young adult women (under 40) and older men (over 60), but it can occur at any age. Children sometimes develop MG.

MG is not directly inherited nor is it contagious. Sometimes the disease may occur in more than one member of the same family. If a woman with MG becomes pregnant, sometimes the baby acquires antibodies from the mother and has MG symptoms for a few weeks or months after birth. This is called neonatal myasthenia, and the symptoms can be treated.
In rare cases, myasthenia is caused by a defective gene and appears in infants born to non-myasthenic mothers. This type is called congenital myasthenia.

What is the Role of the Thymus Gland in MG?
The thymus gland, found in the upper chest area beneath the breastbone, is a part of the body's normal immune system. In most adults with MG, the thymus gland is abnormal. Some people with MG develop thymomas or tumors on the thymus gland. Generally thymomas are benign, but they can become malignant (cancerous). The relationship between the thymus gland and MG is not yet fully understood.

What are the Signs and Symptoms of MG?
The muscles that control eye and eyelid movement, facial expression, and swallowing are most often affected. The onset of the disorder may be sudden. Symptoms often are not immediately recognized as MG.

In most cases, the first noticeable symptom is weakness of the eye muscles. In others, difficulty in swallowing and slurred speech may be the first signs. While rare, first signs of MG can also include difficulty with breathing. The degree of muscle weakness involved in MG varies greatly among persons with this disease. Symptoms, which vary in type and severity, may include:

• Drooping of one or both eyelids (ptosis)
• Blurred or double vision (diplopia) due to weakness of the muscles that control eye movements
• Unstable or waddling gait
• Weakness in arms, hands, fingers, legs, and neck
• Change in facial expression
• Difficulty in swallowing and shortness of breath
• Impaired speech (dysarthria)
• Shortness of breath

How is MG Diagnosed?
Unfortunately, a delay in diagnosis of one or two years is not unusual in cases of MG. Weakness is a common symptom of many other disorders. The diagnosis is often missed in people who have mild weakness or in those whose weakness is restricted to only a few muscles.

The first steps of diagnosing MG include a review of the person's medical history and physical and neurological exams. If the doctor suspects MG, several tests are available to confirm the diagnosis.

• Antibody blood test. A special blood test can detect the antibodies that prevent nerves from signaling to muscles. While most people with MG have abnormally high levels of these antibodies, some individuals (about 10 percent) can actually test negative for antibodies. And, antibodies may not be detected if only eye muscles are affected.
• Edrophonium test. When this drug is injected, the weak eye muscles of people with MG will briefly get stronger.

• Nerve conduction test/repetitive stimulation. This is a test of specific muscle fatigue by repetitive nerve stimulation.
• Single fiber electromyography (EMG). In this test, pairs of single muscle fibers are stimulated by electrical impulses. It can detect impaired nerve-to-muscle transmission.
• Computed tomography (CT) or magnetic resonance imaging (MRI). These tests can help identify an abnormal thymus gland or a thymus gland tumor.

• Medications. Drugs used include cholinesterase inhibitors such as neostigmine and pyridostigmine. These drugs help improve nerve signals to muscles and increase muscle strength. Immunosuppressive drugs such as prednisone, cyclosporine, and azathioprine may also be used to suppress the production of abnormal antibodies. They must be used with careful medical followup because they can be associated with major side effects.
• Thymectomy, the surgical removal of the thymus gland (which is abnormal in most persons with MG). This surgery is done for persons with MG who have tumors, as well as for individuals without tumors. It improves symptoms in more than half of individuals without tumors. It may cure some people with MG, possibly by re-balancing the immune system.

Other therapies sometimes used to treat MG during especially difficult periods of weakness include:

• Plasmapheresis or plasma exchange. This is a procedure that removes abnormal antibodies from the blood.
• High-dose intravenous immune globulin. This treatment temporarily interferes with the ability of the immune system to damage the nerve muscle junction. Treatment options for a person with MG depend on the severity of the weakness, which muscles are affected, and the person's age and other medical problems.

In a few cases, MG may cause severe weakness resulting in acute respiratory failure. But most people can expect to lead normal or nearly normal lives.

What is a myasthenic crisis?
A myasthenic crisis occurs when weakness affects the muscles that control breathing. This can create a medical emergency requiring a respirator to help the person breathe or measures to prevent a person from taking in, or aspirating, too much air into their lungs. In individuals whose respiratory muscles are weak, infection, fever, a reaction to medication, or emotional stress can trigger a crisis.

How can I help take care of myself if I have MG?
You can follow a few simple steps to help cope with the condition in your daily life. Plenty of rest and a well balanced, potassium-rich diet can help ease fatigue. Good sources of potassium include oranges, orange juice, and bananas. It is important to avoid overexertion, and if necessary, to rest the eyes or to lie down briefly a few times a day.

1. ANTI-ARRHYTHMICS
These are used to treat and prevent irregular heart beat. The ones in this list have largely been superseded by newer, safer, drugs, including beta-blockers (see below).

• Procaine Amide Pronestyl

• Quinidine Kinidin Durules

2. ANTIBIOTICS
These are used to prevent and treat bacterial infections. One group (A), which contains six members, affects transmission between nerve and muscle, and therefore can make MG worse. They are chiefly given by injection, and you are therefore most likely to come across them in hospital. You are more likely to encounter those in groups B, which are usually given as tablets, often for chest infections, but which are much less likely to upset your MG, and C, which are commonly used for bladder and kidney infections. Group D is now used very rarely.  

Group E (one member) are antibiotics which have been shown to have serious side effects , and which must not be prescribed to myasthenics.

• A.
• Gentamicin Genticin, Genticin Ear/Eye drops, Cidomycin Injection, Cidomycin Ear/Eye drops/ointment
• Amikacin Amikin
• Netilmicin Netillin
• Tobramycin Nebcin
• Streptomycin
• Kanamycin Kannasyn
• B.
• Tetracycline Achromycin, Sustamycin, Tetrabid, Tetrachel, Deteclo, (Mysteclin).
• Doxycycline Nordox, Vibramycin,
• Limecycline Tetralysal 300
• Minocycline Minocin MR
• Oxytetracycline Terramycin
• C.
• Ciprofloxacin Ciproxin
• Acrosoxacin Eradicin
• Cinoxacin Cinobac
• Nalidixic Acid Mictral, Negram, Uriben
• Norfloxacin Utinor
• Ofloxacin Tarivid
• D.
• Polymixin B
• Colistin Colomycin Injection
• E.
• Telithromycin Ketek  

3. ANTI-MALARIALS
These drugs are sometimes also used to treat rheumatic conditions.

• Chloroquine Avloclor, Nivaquine
• Hydroxychloroquine Plaquenil

4. ANTI-RHEUMATIC DRUGS

• Penicillamine Distamine, Pendramine.

5. ANTI-SPASMODICS
These drugs, which are used to relax and reduce the activity of the bladder and bowels, act by opposing the action of acetyl-choline (whereas drugs like mestinon promote it), and therefore carry a warning against their use in patients with MG. In fact, theoretically, they should not interfere with the action of acetyl-choline on muscle, and in practice there have been no reports of adverse effects in MG - perhaps because the warning has been so effective!

• Flavoxate Urispas
• Oxybutinin Cystrin, Ditropan
• Propantheline Probanthine

6. BETA-BLOCKERS
These drugs are used for the treatment of angina and other forms of heart disease, high blood pressure, migraine, and, occasionally, anxiety. They commonly produce a feeling of fatigue or muscle weakness, which tends to improve with continued treatment, and, rarely, have been reported to induce MG.

• Propranolol Inderal, Angilol, Apsolol, Bedranol, Berkolol, Beta-Prograne, Cardinol, Propanix, (Inderetic, Inderex)
• Atenolol Tenormin (Tenif, Tenoretic, Tenoret 50, Co-Tenidone), Atenix, Antipressan, Kalton, Totamol, (Beta-Adalat, Co-Tenidone, Totaretic)
• Acebutolol Sectral (Secadrex)
• Betaxolol Kerlone
• Bisoprolol Emcor, Monocor, (Monozide)
• Carvedilol Eucardic
• Celiprolol Celectol
• Esmolol Brevibloc
• Labetalol Trandate
• Metoprolol Betaloc, Lopresor, (Co-Betaloc)
• Nadolol Corgard
• Oxprenolol Trasicor, (Trasidrex)
• Pindolol Visken, (Viskaldix)
• Sotalol Beta-Cardone, Sotacor, (Sotazide, Tolerzide)
• Timolol Betim, Blocadren, (Moducren, Prestim, Timoptol Eye-drops).

7.DRUGS USED IN EPILEPSY

• Phenytoin Epanutin

This is always listed among drugs which can precipitate MG, but actual reports of problems are rare.

8. DRUGS USED IN PSYCHIATRY
A. Chlorpromazine and related drugs. These drugs are used in a wide variety of conditions. The original members of the group, chlorpromazepine and promazine, were reported to aggravate, or even to precipitate MG, but there are now a lot of newer analogues, and reports of trouble from these are rare. However it is probably still wise to use them cautiously.

• Chlorpromazine Largactil
• Clozapine Clozaril
• Flupenthixol Depixol
• Fluphenazine Moditen
• Loxapine Loxapac
• Methotrimeprazine Nozinan
• Oxypertine
• Pericyazine Neulactil
• Perphenazine Fentazin
• Pimozide Orap
• Prochlorperazine
• Promazine Sparine
• Risperidone Risperdal
• Sulpiride Dolmatil, Sulpitil
• Thioridazine Melleril
• Trifluoroperazine Stelazine
• Zuclopenthixol Clopixol Acuphase

• B. Lithium Camcolit, Liskonum, Li-liquid, Litarex, Priadel.
• C.
• Phenelzine Nardil,
• Isocarboxazid Marplan
• Tranylcypromine Parnate, (Parstelin)

9. MUSCLE RELAXANTS
These drugs are designed to cause muscle paralysis and are used almost exclusively by anaesthetists. There are two classes of muscle-relaxants: curare-like drugs, which must not be used in MG, and depolarising relaxants, which can sometimes be used. Both types must be distinguished from drugs such as the minor tranquillisers, which are often called "muscle-relaxants", although their effects are entirely non-specific.

Is MG associated with other conditions?
Since it is an autoimmune disease, it may occur in combination with other autoimmune conditions such as rheumatoid arthritis, Sjorgrens syndrome, lupus, pernicious anemia, or autoimmune thyroiditis.

What Research is Being Done?
Much has been learned about Myasthenia Gravis in recent years. Technological advances have led to more timely and accurate diagnosis, and new and enhanced therapies have improved management of the disorder. Much knowledge has been gained about the structure and function of the neuromuscular junction, the fundamental aspects of the thymus gland and of autoimmunity, and the disorder itself. Despite these advances, however, there is still much to learn. The ultimate goal of Myasthenia Gravis research is to increase scientific understanding of the disorder. Researchers are seeking to learn what causes the autoimmune response in Myasthenia Gravis, and to better define the relationship between the thymus gland and Myasthenia Gravis.

Today's Myasthenia Gravis research includes a broad spectrum of studies conducted and supported by NINDS. NINDS scientists are evaluating new and improving current treatments for the disorder. One such study is testing the efficacy of intravenous immune globlin in patients with MG. The goal of the study is to determine whether this treatment safely improves muscle strength. Another study seeks further understanding of the molecular basis of synaptic transmission in the nervous system. The objective of this study is to expand current knowledge of the function of receptors and to apply this knowledge to the treatment of Myasthenia Gravis.

Drug Bank
MG patients frequently take costly medications in order to keep their symptoms in check. In many cases, health insurance does not cover the cost of these drugs.

Through our Drug Bank Program, MGFC is able to offer patients the chance to purchase life-saving MG medications at low cost. Because grant funds are received to subsidize this program, the Drug Bank is restricted to MG patients residing in California and Nevada. The Drug Bank operates as a mail order service. Because medications are only shipped once a week from Glendale Medical Pharmacy, it is suggested patients keep an ample supply of medications on hand (3-4 weeks).

To request a Drug Bank Application form, call the Myasthenia Gravis Foundation of California at (800) 574-7884 or (323) 887-0056 or email: melisa@myasthenia-ca.org.


The MG Newsletter
MGFC also publishes two outstanding newsletters each year. With MGFC Board Member, Sherman Teller, as Editor-in-Chief, these publications are a volunteer effort with physicians, clinicians and other health care professionals along with MG patients, family members and caretakers contributing articles.  Newsletters are educational, informative and uplifting. Stay tuned for more information on our upcoming e-newsletter coming later this year.  If you wish to contribute an article, please call the Myasthenia Gravis Foundation of California at (800) 574-7884 or (323) 887-0056 or email: info@myasthenia-ca.org.

ADDRESS CHANGE

If you have moved, please inform the MGFC office so that you can receive your newsletter on a timely basis. Returned newsletters cost MGFC hundreds of dollars a year – money that could be used for research or valuable patient services.  To change your address, please email: melisa@myasthenia-ca.org or call (toll-free) (800) 574-7884.  Thank you.