Terra Messmer is a practicing attorney in Tucson, Ariz. She’d had symptoms of muscle weakness since childhood and got a correct diagnosis of congenital myasthenic syndrome in 2000. Her symptoms are stabilized with medication. Introduction Questions and Answers Part I - MG Part II - LEMS,CMS MDA's Search for Treatments and Cures MDA Is Here to Help You

INTRODUCTION

Dear Friends:

Several years ago, I started to feel weak and tired all the time, especially in my neck. Basic functions that I’d always taken for granted — like chewing, swallowing and talking — suddenly became difficult. One of my eyes began to droop and my arms felt weak.

	Judy Walsh

I hoped these were signs of some temporary illness, but my symptoms continued and, finally, physicians discovered I had myasthenia gravis. I worried about how having this disease would affect my future, my general health, my family and my career as a pediatric psychotherapist, which requires a lot of talking with clients and health care professionals.

Now, I don’t worry so much — at least not about MG. If you or someone you love has just received a diagnosis of MG, you’ll learn, as I did, that a variety of treatments can be used to control it. By learning more about MG and by partnering with your physician, you’ll discover that you can become an active participant in your treatment plan, adjust to your diagnosis and take control in maintaining the quality of your life.

This pamphlet will provide you with essential information about the symptoms of MG and the best treatments for it — which are different for each person. You’ll find out that MG causes progressive weakness and fatigue in the body’s voluntary muscles, without affecting the musculature of the heart. Although it can weaken the muscles that control breathing, MG usually doesn’t shorten life expectancy.

The pamphlet also contains information about two types of disease related to MG — Lambert-Eaton myasthenic syndrome (LEMS) and congenital myasthenic syndrome (CMS). Some of the treatments that work against MG also work against LEMS and some types of CMS. You’ll learn details about these treatments — from drugs to surgery and other procedures — that will help you discuss your options with a physician.

The Muscular Dystrophy Association can help guide you through this process in many ways. Doctors at an MDA clinic near my home diagnosed my MG and established an appropriate course of treatment. I visit the clinic regularly, and they continue to adjust the treatment to any changes in my needs. The local MDA staff were there for me on the day I was diagnosed and have been available for support ever since.

Since my diagnosis, I’ve continued to work, and my husband and I have raised two children who are now adults. I lead a very active life and enjoy community service, gardening, sailing, travel and the arts.

At times, I’ve had to make adjustments. When I’ve had episodes of  extreme weakness, my family has been there to help me. I’ve cut back some of my hours at work, and accommodations have been made at work to help me conserve my energy.

Changes at work can be challenging but remember: If you have lasting or recurring disability from MG or any other disease, the law entitles you to reasonable workplace accommodations and equal employment opportunities.

And remember that MDA is here to help. If you have questions not answered in this pamphlet, you can find information in MDA’s other publications or on its Web site, or you can ask a member of your local MDA staff. With the help of the MDA staff and others who understand your illness this is a journey that you don’t have to take alone.

Judy Walsh
Providence, R.I.

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