Hello, my name is Sheila and I want to get serious for this page. This page is about a terrible disease. It is also about my family and coming to terms with something we have no control over.
MG as it is commonly called, is a chronic neuromuscular disease that produces weakness and rapid fatigue of the voluntary muscles.
The American Heritage Dictionary describes the word "myasthenia" as abnormal muscle weakness or fatigue, and the word "gravis" as meaning severe.
The term "gravis" is not used much anymore, as there has been great advancement in the treatment of MG.
In an excerpt from an article in the New England Journal of Medicine by Dr. Daniel B. Drachman, ...........
The outlook for patients with myasthenia gravis has improved dramatically in recent years. Before 1958, the mortality rate among patients with generalized myasthenia gravis was 30 percent. . . . Now with optimal care the mortality rate is essentially zero. (1797-1810)
The symptoms that lead to a diagnosis can vary from person to person, but in general they can include, weakness of the eye such as double vision, difficulty in smiling, swallowing, or breathing, waddling gait, and weakness in the limbs. Extreme fatigue is also a major symptom of MG. Patients with MG have often been referred to as looking like "Sleepy the Dwarf" from the famous Disney movie.
Actually, Walt Disney had a close friend that had MG, and he modeled the dwarf after him, thus the smile.
Since MG symptoms and the symptoms of other diseases are very close in relation, there are certain tests that help doctors make definite confirmation in the diagnoses.
The first step in an accurate diagnosis is pharmacological testing.
This involves using a drug called Tensilon. It is given intravenously and just a small amount is given at a time. In an article taken from the American Association of Neurologists, it is stated that, "Intravenous edrophonium [Tensilon] is of greatest value in patients with definite ptosis [drooping eyelids] or extraocular weakness. . . .A measured improvement. . .in at least one extraocular muscle constitutes a positive result".
Essentially this test makes the patient with MG stronger for about sixty seconds and no longer feel the disease if only for a few moments.
The doctor quickly performs a series of tests that include pressing against the patient's eyelids to see if the patient can hold them closed. This in itself is a good indicator for MG.
The next step is testing the muscles by repetitive movement. This is most easily done by using electrophysiologic testing. A common name for this test is single fiber electromyography, or EMG. The American Association of Neurologists article states, Single fiber electromyography. . .is a more sensitive technique [than manual stimulation] for studying neuro-muscular transmission.
Approximately 90% of patients with mild myasthenia have abnormal EMG. Patients with myasthenic syndrome. . . may also exhibit loss of . . . firing of individual muscle fibers in the motor unit.
The test involves inserting a needle that conducts electricity into a limb muscle. This causes the muscle to "jump" or "jitter." This is done repeatedly, which causes the muscles to weaken in the myasthenic patient. The "jitter" slowly decreases, giving the confirmation of MG. A third approach in testing is an antibody titer blood test.
This test measures antibodies to acetylcoline.
Acetylcholine is a chemical that functions as a neurotransmitter, conducting electrical impulses between nerve cells and muscle cells.
In myasthenia gravis, "the immune system produces these antibodies against the receptors. . . that acetylcholine attaches to, impairing the receptors function.
Although this titer test is a good indicator for MG, there are some patients who have MG, yet show no antibodies.
Once there is a definite diagnosis, the patient will then usually undergo a CT scan or a MRI. These tests are used to check the size of the thymus gland. According to Microsoft's Encarta, .. . . . [the thymus gland is] a structure located just beneath the upper portion of the sternum. . . .[with] a weight of about 43 grams (about 1.5 oz). . . . Abnormal enlargement of the thymus or development of tumors of the gland [thymomas] may occur in myasthenia gravis, but the reason is not known.
After the patient has undergone all the necessary tests, the next step is to find the appropriate treatment for that individual.
While there is no cure for MG, patients can usually lead fairly normal lives with the correct treatment. If the CT or MRI scans show an abnormal thymus, usually a Thymectomy, or removal of the thymus, is performed.This involves cutting of the sternum and removing the gland and fatty tissue surrounding the area. If a thymoma is present, it is checked to rule out cancer of the thymus, which is very rare. "In a study,(American Academy of Neurologists) 80% of patients [that undergo a Thymectomy] will be significantly improved."
Most people that have MG take an anticholinesterase medication. These medications prolong the action of acetylcholine at the muscle junction and improve muscle function. These types of drugs treat only the symptoms, just as an aspirin treats a headache. Once the medication wears off, the symptoms return.
Immunosuppresive drugs are also used in some cases. These drugs can put a patient into long-term remission.
Their exact role in MG is not known, but is thought to suppress the antibodies that are causing the problem.
The success rate with immunosuppressive drugs has been accomplished with better tolerance than cortosteroids, because of less side effects.
Although a close watch must be kept on the patient's liver levels, the side effects are much easier to tolerate, with improvement seen in 3 to 6 months. These drugs do have serious side effects, but if the patient keeps in close contact with his or her doctor, most can be treated. The biggest risk is liver toxicity. The patient should have blood work done very frequently to alert the physician of any toxicity, if this does occur, the patient is usually taken off the medication. The use of cortosteroids has been carefully weighed.
This is an effective treatment for MG, despite the side effects.
Cortosteroids has a great number of undesirable side effects such as, mood swings, weight gain, infection, diabetes, high blood pressure, osteoporosis, glaucoma, cataracts, and stomach ulcers.
This nessitates close medical supervision of the patient when cortosteroids is instituted.
I wish I had NEVER heard of this disease!
But I do because my son was just diagnosed with this about four weeks ago.
If I sound mad, it's because I am.
This is going to be my therapy
If no one ever reads this it will still help me to get through it.
I will start from the beginning.
December 19 ,1967 Baby Boy was born.
He is beautifull.
Black hair and the biggest blue eyes and the longest eyelashes I have ever seen.
The nurse keeps coming in wanting to know what we were going to name him.
I kept telling my husband "We should name him after you, David Allen Jr." My husband would say "No I don't want my kid called "Jr".
Well, the next time the nurse came in she told me, "If you don't give me a name right now you will have to stay in the hosp. another day".
I wanted to go home and I didn't have another name so I said, " We will name him David Allen JR."
The next day, I had to tell David that there was another David. He said," well now, what are we going to call him"? I had allways known the answer to that one.
It was Davy.
So there we were and we were all going to grow up together. I was seventeen, David was nineteen and Davy was three days old.
From then on everything that we were and everything we did was because of that little bundle of joy.
Three months later we were flying to California from Missouri.David had a new job in San Fransisco. It might have been the sixties and we were young but all it meant to us was making a good home-life for our little family. David worked hard at his job trying to build up his career while I stayed home teaching Davy how to talk and crawl. Of course he learned eveything fast. He was talking by the time he was six months old and he was sitting up at four months. Yes, I was a proud mother. He was crawling at six months. He took his first real step on Thanksgiving Day, a month before his first birthday.
As you can see, we were very happy to be parents. We are still very happy to be parents and Grandparents now, thirty-two years later. We had another son seven years after we had Davy.
So we have had a pretty normal life with our two sons.David and I have celabrated thirty two years of marriage and our sons are thirty one and twentyfive.
Both boys played basketball in school and were very active.
Davy has been coaching his oldest sons' team in baseball for about four years in the summer.
Davy and his wife, Mary just finished building their house which all of them helped build.
His Dad and I are so proud of Davy and his family, they work together and play together. We know our hard work payed off because we can see the fruit of our labor just as they will one day when their children grow up.
They are great parents so I know they will.
About four weeks ago Davy called and said that he had something wrong with his eye and he was going to the Doctor to see what was going on.
He said he thought it looked like he had a stroke.I thought maybe it was Bells Palsey.I had known a young boy that went to our church that had woke up one morning that had Bells Palsey so I thought maybe, there wasn't anything to worry about.
Davy called that evening and said the Dr. said it wasn't Bells Palsey or a stroke.He said the doctor wanted to do some tests to see what was going on.He said that he was unable to keep his eye open now and he felt wore out.
The next couple of days Davy was busy doing different tests,blood tests, MRI and others. Every day he would call and say the doctor had him doing different tests.
The next week when he called, he said the doctor thought she knew what it was, but didn't want to say yet untill she got all the results in.I thought that was good, no since in getting worried if it wasn't what she thought it was. The doctor got all of the results back and she said it was Myasthenia Gravis. We had never heard of it so like all mondern day people we got on the internet to find out what this was.
Well, we can beat our chest all we want to and it won't change a thing.
Like I said before, this will be my therapy. I also said at the beginning of this that I am mad. Well, I am mad, at this disease and that there is no cure for it because as a mother I don't want my child to have to go through this.
I would rather that it be me, not one of my children.