Georgia State Chapter Newsletter Fall 2005

 

Contents:

Neurology Expo

Myasthenia Gravis: An Overview

Prednisone

Myasthenia Gravis and Speech/Voice Disorders

Drugs and Other Concerns

Remembrances

 

 

 

 

 

 

 

 

NEUROLOGY EXPO

Everyone is invited to the first Neurology EXPO sponsored by the American Academy of Neurology and its Foundation on Saturday, October 22, from 10:00 a.m. to 4:00 p.m. Held at the Georgia World Congress Center in hall A2, Neurology EXPO is aimed at providing information to people with neurological diseases.

There will be something for everyone at Neurology EXPO. A variety of healthcare providers will exhibit their products and services. Patient advocacy groups, including the Georgia State Chapter, MGFA, will provide information about their programs and activities. The "Youth World" will offer interactive educational programs where children from kindergarten to high school can learn about the brain and the nervous system.

Neurologists will present educational programs of interest on three stages, including the following topics:

* Multiple Sclerosis

* Epilepsy and Women

* Stroke Prevention and Treatment

* Dementia and Alzheimer's Disease

* Parkinson's Disease

* Complementary and Alternative Medicine in Neurology

* Caregivers

* New Medicare Legislation

Admission is free for children 18 and under. The cost for adults is $6. Discounted parking coupons and FREE admission coupons are located on page 7 of this newsletter (make copies if you like).

The Georgia World Congress Center is located at 285 Andrew Young International Blvd. NE in Atlanta. For directions and more information about Neurology EXPO, visit www.thinkneurologynow.org.

Established in 1948, the American Academy of Neurology is an association of nearly 19,000 neurologists and neuroscience professionals dedicated to improving patient care through education and research.

 


MYASTHENIA GRAVIS: AN OVERVIEW

Carol Ann Smith, RN

Definition:

Myasthenia Gravis is a neuromuscular autoimmune disease.

It manifests itself by weakness of muscles under voluntary control and fatigue.

Incidence:

1 in 40,000

Women to Men 2:1 All races

Presenting Symptoms:

Onset for women usually under 40; Onset for men usually over 50

41% diplopia (double vision)

24% ptosis (drooping eyelid)

16% difficulty with voice

13% weak legs

11% difficulty swallowing

10% difficulty chewing

7% weak arms and hands

The Normal Neuromuscular Junction

Nerve cell sends message - acetylcholine (neurotransmitter) is released at the end of the nerve cell - acetylcholine carries message over synapse - message arrives at muscle and finds a receptor to latch on to - muscle receives message and muscle functions. An acetycholinesterase enzyme "eats up" acetylcholine.

What's Your Thymus Gland For?

Serves an extremely important role when you are a newborn in the development of your immune system. Manufactures T-cells and B-cells, which are basis of our immune response. Serves a role through childhood but diminishes with puberty and not really needed after that.

What's Different in MG?

Basically, your immune response is different from people who do not have MG. You have an "autoimmune disease" and in a way are allergic to yourself. Your immune system recognizes a part of you as foreign and attacks it. In MG, it is the muscle receptor site that is attacked.

In people with MG, a certain portion of the thymus gland becomes "hyperplasic" or the tissue in it becomes "abnormal". Some people get a tumor (about 15%) but most do not. This hyperplasic tissue causes the immune system's T-cells and B-cells to function in an unusual way, which causes an autoimmune response to occur. The cells in the hyperplasic tissue manufacture the anti-AchR antibody and can also teach other cells in the body to secrete it. This antibody is contained in the IgG portion of our blood plasma and so circulates through the entire body.

The receptor sites on the surface of the muscles are the targets of this antibody. The antibody attacks the muscle receptor site and renders them totally or partially inactive and unable to receive messages properly. It also changes the structure of the neuromuscular junction by widening the synapse and flattening the muscle receptor site membrane. If the muscle doesn't receive the message, it won't do what it is supposed to do, such as keep your eyelid open, focus your eyes, swallow, walk, etc.

Treatment of MG

Symptom Treatment - acetylcholinesterase medications such as Mestinon

Immune System Suppression - steroids such as Prednisone or cytoxic drugs such as Imuran

Decrease Antibody Titer - thymectomy, plasmapheresis, IVIG

What Can I Do To Help Manage Mv MG?

AMPS: Minnesota State Chapter/Nutmeg

 

PREDNISONE

One of the first medications prescribed for many myasthenics is prednisone, a drug used to suppress the immune system and help to bring the symptoms of myasthenia gravis under control in a timely manner.

Basically, prednisone is a man-made version of a steroid normally produced in the human body. Steroids are a group of hormones produced in the adrenal glands, which are located over the kidneys. Naturally occurring steroids, as a group, help control metabolism, inflammation, immune function, salt and water balance, and the ability to withstand the stress of illness or injury.

One of the steroids produced by the outer portion of the adrenal glands is cortisone which normally helps regulate the body's salt and water balance and reduces inflammation. Prednisone was developed in 1955, as a pharmaceutical replacement for cortisone. The adrenal glands normally produce an amount of steroids equivalent to about 5 to 7. 5 mg. of prednisone a day. When prescribed in doses exceeding the natural levels, prednisone suppresses inflammation and immune responses. This effect is beneficial when treating autoimmune diseases like myasthenia. However, whenever the immune system is weakened, the body's susceptibility to infection may be

increased. Prednisone does not make an individual more likely to get a flu or catch a cold, but it may increase susceptibility to herpes viruses and some other illnesses. Prednisone is not the same as the dangerous anabolic steroids used by athletes to increase muscle mass. It is not a sex hormone and is not addictive.

Myasthenics, unless instructed otherwise, generally take all the prescribed dosage of prednisone once in the morning. This mimics the natural release of cortisone in the body. Every effort is made to minimize long term damage resulting from adrenal gland suppression. To help in those patients who can tolerate it, prednisone can be given on alternate days. This allows the body a brief reprieve from the drug.

Prednisone is best taken with food, since it can irritate the stomach lining. It should be taken as prescribed and the dose should not be altered without a physician's approval. The goal is to control symptoms with the lowest effective dose possible, taken for the shortest period of time. Prednisone should not be abruptly stopped. Over time the adrenal glands may lose the ability to produce steroids naturally and may shrink in size. Abrupt withdrawal after even one month may lead to severe medical complications.

Prednisone is one of the medications most effective in treating myasthenia. However, there can be many potential problems. These negative side effects are usually dose-dependent. This means the more prednisone taken over a longer period of time, the greater the risk of side effects. Therefore, the goal is to control symptoms, and gradually reduce, or "taper" the dose. Reducing the dose may result in symptoms such as muscle soreness, joint pain, fatigue and depression. If any unusual symptoms are experienced or if myasthenia symptoms worsen, as the prednisone dose is reduced, the physician should be contacted. It may be necessary to temporarily adjust the dose. For many myasthenics, prednisone is used as a first line of immune suppression. It acts quickly for many to bring symptoms under control. Another drug may be introduced to continue long term control of immune responses. Among these drugs are Imuran and CellCept, which are slower to take effect. Hence, prednisone is given early and tapered as the new drug takes effect.

Prednisone has a number of side effects which may require specific management. Taking the medication exactly as prescribed may help control the negative aspects. Problems experienced should be reported to the physician. Side effects vary from person to person, but should be recognized and may be managed independently of the myasthenia. Conditions that the myasthenic should note and the doctor will watch for and help manage are:

Weight gain

Rise in blood sugar

Osteoporosis

Avascular necrosis (uncommon) (bone death, especially in the hip joint)

Skin problems: acne, slow wound healing, bruising, etc.

Digestive upset

Mood swings: euphoria, insomnia, anxiety

Eye changes: cataracts, glaucoma

Myopathy

The decision to use prednisone to treat myasthenia gravis should be one that is carefully considered and discussed with the neurologist. Side effects may be reduced through careful monitoring of the dosage, using the smallest effective dose and, in some cases, using alternate day therapy, with no prednisone or a smaller dose on alternate days.

AMPS: Upstate NY Jan. 2005








MYASTHENIA GRAVIS AND SPEECH/VOICE DISORDERS

By: Frank B. Wilson, Ph.D. of the American Speech Language Hearing Association

And Professor in the Department of Speech Pathology and Audiology at the University of

Alberta, Edmonton, Canada

People in the early stages of Myasthenia Gravis often consult a Speech-Language Pathologist

because they are concerned about a change in their voice quality. Common, early voice symptoms of Myasthenia Gravis are an increased nasal sound to the voice. This occurs because the onset of MG often affects muscles of the neck and facial region. Resonance disorders associated with MG develop during or after puberty begins; only rarely does MG occur earlier.

As an example of nasality, the pronunciation of the word "baby" may sound like "may be".

Besides excessive nasality, people in the early stages of MG often have difficulty in chewing and swallowing, less facial expression than they previously had, drooping of the eyelids, and occasional episodes of liquid or food coming up through the nose. Patients become excessively tired and frequently note their voice problems get worse toward evening.

Because of muscle weakness, some sounds may be made with less emphasis. The word "sit" may sound like "it" for example.

When the medication is totally effective in controlling, at least temporarily, some of these

symptoms a Speech-Language Pathologist may provide help in several areas.

One area is use of speech prosthesis. The prosthesis, or appliance, is constructed by a

prosthodontist, in conjunction with a Speech-Language Pathologist. A correctly fitted appliance can reduce hypernasality and improve the potential for better articulation.

Another area is swallowing. The person with MG can have difficulty in swallowing when tired or all the time. A Speech-Language Pathologist will take a complete history of the swallowing disorder to deal with effective approaches to deal with it.

A third area is voice production. Many MG patients have problems with voice production. In the advanced stages of MG most patients will experience breathlessness, reduced loudness, two-pitched voice and the intermittent loss of voice. A program of voice therapy emphasizing good

vocal hygiene is helpful. It is also helpful for the patient with MG to have training in listening skills to better maintain adequate articulation.

In more severe cases of MG, augmentative communication systems or devices ranging from a picture board to a computer with synthesized speech, may be helpful.

AMPS: MG.Association of B.C.










DRUGS AND OTHER CONCERNS

Many prescription drugs can unmask or worsen symptoms of MG.

These include:

When taking a new prescription drug for the first time, it's a good idea to consult your doctor

about its possible effects on MG. Also, you might want to keep a Medic Alert bracelet or card handy to inform emergency medical personnel that you have MG and that certain drugs can be harmful to you.

Overexertion, emotional stress, infections (from tooth abscesses to the flu), menstruation and

pregnancy can also lead to increased weakness in MG.

Myasthenic Crisis

Especially in people with bulbar or respiratory symptoms. MG can sometimes worsen to the

point of myasthenic crisis, an extreme episode of weakness that culminates in respiratory failure and the need for mechanical ventilation. In some cases, the respiratory muscles themselves give out, and in others, weakness in the throat muscles causes the airway to collapse.

When MG is properly treated, crisis is very rare. And when crisis does occur, it has a good rate of recovery, thanks to the wide range of treatments for MG and the quality of respiratory care at most hospitals.

Sometimes, myasthenic crisis can occur without warning, but it often has an identifiable trigger, such as fever, respiratory infection, traumatic injury, stress, or one of the drug types mentioned.

If you have MG, you should have these conditions monitored by a physician, and if you experience labored breathing or unusual weakness, you should seek immediate medical attention.

Taken From the Muscular Dystrophy Association webpage at http://wwww.mdusa.org/publications/fa-mg-qa.html













REMEMBRANCES

                                      In Memory of:                           By:

                                                     Tommy Harris                                         Michelle Lewis

                                                     Morris Weinstein                                   Arva Weinstein

 

                                                    In Honor of:                             By:

                                                    Dianne George & Chapter Officers          Jason & Betty Hoffman