This article is second in my series about Myasthenia Gravis. I am targeting patients and their caregivers, nurses, and allied health professionals. I hope this helps anyone with an interest in the topic. I am an RN and psychotherapist, as well as an MG patient. I had planned to follow up on section one much more promptly, however I was hospitalized again with an exacerbation (flare up of breathing weakness) due to this disease. This section will focus on diagnostic tests and treatments. If you are a patient, your doctor will prescribe what is needed for you. MG’s nickname is the snowflake disease because symptoms vary so much from person to person. Also, a patient’s symptoms can change quickly. If I have had these diagnostic tests or treatments, I will share a personal experience comment. Please remember that we patients are as diverse as snowflakes and our experiences vary.
Over two-thirds of Myasthenia Gravis patients experience ocular symptoms before they experience other MG symptoms. Half the people with ocular symptoms will develop generalized muscle weakness in the first two years of their ocular symptoms. (This is true for me. I had eye symptoms for one year prior to developing generalized MG). Fifteen per cent of people have only ocular problems. If someone has only ocular MG for four years, they will probably not develop generalized MG. Eye muscles are usually involved in Myasthenia Gravis, however a few patients do not have ocular symptoms.
These are tests that are often given to an individual with ocular MG symptoms. The anti-acetylcholine receptor antibody is a blood test that is usually given for both ocular and generalized MG. Your doctor will determine the need for some or all of these other lab tests: Anti-striated muscle antibody, Anti-Musk antibody, Anti-lipoprotein 4 antibody and Antistriational antibody (These lab tests are similar to other blood draws. I did not find them difficult, but these tests would be traumatic for people who do not do well with needle sticks.)
These vision symptom may appear in other diseases, therefore tests to rule out other diagnoses may be administered. A brain MRI is helpful. (This is a noisy test and the MRI equipment is very close to the face. Meditation gets me through this.) Claustrophobic patients may need an open MRI. Sometimes the doctor will prescribe an anti anxiety medicine to be taken prior to the test.
Patients with ocular Myasthenia Gravis e an abnormal single-fiber EMG. In this test, a recording needle electrode is inserted into the neuromuscular junction. This test is different than a regular EMG. This test should be administered by a doctor with extensive experience.(This test was very painful for me when done on my eye area nerves and muscles. In retrospect, it was worth it because it was conclusive in diagnosing my MG.)
Of course, the skills of the ophthalmologist are very important in diagnosing and treating ocular MG. A neuro ophthalmologist should be involved. There are not many of these specialists. (I live near a large city and I am fortunate to have this kind of specialist on my team.)
A variety of interventions can help the patient with ocular MG. A patch on one eye helps a person with double vision. Prisms that cling to regular glasses are an inexpensive way to treat double vision. Prisms can also be ground into glasses. (Both types of prisms have helped me.) Eyelid crutches are sometimes attached to glasses to help lift drooping eyelids. A special tape can also be used to lift drooping eyelids. Dark glasses can be helpful. As the day progresses, symptoms usually worsen. Rest may help eye symptoms.
MY REGULAR GLASSES AND SUNGLASSES WITH STICK ON PRISMS
Medicines that may be prescribed are drugs that alter the immune system such as prednisone (I have needed prednisone in varying doses.), Imuran (I had a severe negative reaction that lasted for about one week. but this drug does help many MG patients.), Cyclosporine and Cell Cept. These drugs are quite a mouth full, but after a while they become common language for MG patients. Mestinon is a different drug classification. It improves neuromuscular transmission. It helps relieve drooping eyelids. (I have been helped by varying doses of Mestinon throughout my illness.)
My next chapter in this MG series will address diagnostic tests and treatments for generalized Myasthenia Gravis.
Sources: The Myasthenia Gravis Foundation of America, University of Cincinnati Net Wellness, Medscape News and Perspective, Conquer MG of Il, My awesome treatment team, and Fellow Snowflakes