Myasthenia Gravis Awareness Month June 2008

My sister, Barbara Palmer, was diagnosed with Myasthenia Gravis (MG) in Feb 2008. Prior to this diagnosis she was a very healthy 54 year old individual, no history of illness, not on any medication. She was very successful, active and outgoing, she did not know a stranger. Now with the diagnosis of Myasthenia Gravis her life forever changed. On Saturday February 2, she noticed that she would have difficulty saying some words her tongue felt numb at times. She went to the emergency room at Marietta Memorial Hospital (MMH) in Ohio. After running several tests, (including an EKG, CT scan, x-rays and blood work), they admitted her. The following day, Sunday Feb 3, they did an MRI of her brain an ultrasound of her heart and carotid arteries, The test results were all normal, all the while her speech is progressively getting worse (slurred and stuttering). On Monday Feb 4 the hospital\'s neurologist came in and said, I do not think it is anything neurological and discharged her, only orders: 325mg of aspirin daily and follow up in 1 month with your family dr. I told her, you have to get a 2nd opinion, I made a call to my sister\'s family physician I retold the above events to our sister-in-law, Karen (an employee of my sister\'s family physician) who in turn gave it to a nurse and they immediately got with a neurologist and my sister was seen the next day on Wednesday February 6th, I really don\'t know how quickly this would have been done if we did not have family working at the doctor\'s office. Thursday afternoon she saw this 2nd neurologist, he did additional testing, an EMG and more blood work. He kind of diagnosed her with Myasthenia Gravis. I say kind of because he was unsure still and the EMG that he had done was not conclusive that this was the correct diagnosis. He started her on Mestinon, the oral treatment of choice for MG. He told her to take it 3 times a day and scheduled a follow-up appointment for the following week. Thursday Feb. 14th was the next date she would see this neurologist. During this week her speech was worsening and swallowing was now becoming a real issue. As if that was not enough, a side effect of the medication is excessive salivation. So she was really struggling with a severe increase in saliva and a real difficulty in swallowing, this can be very frightening. I called her everyday, to check on her and take note in her speech. The evening of Wednesday Feb13 when I called her, her husband answered the telephone and told me her speech was so bad that she was not able to talk to me at all. My heart sank, I was very afraid for my sister. Thursday, Feb.14th, my sister goes to see her neurologist for the 1 week follow-up. When the neurologist sees her and the severity of her symptoms now, he sends her to MMH Emergency Room to have additional tests and to be readmitted, she did not get admitted to MMH that day, due to her symptoms, the treatment and the possible side effects of the treatment she was transported by ambulance to Ohio State University Medical Center in Columbus, Ohio. Why the ambulance Myasthenia Gravis can affect the respiratory muscles, severe weakness in the respiratory muscles and cause respiratory arrest (myasthenia crisis) and the need for a ventilator. With the problems she was already having the small town hospital was not equipped to deal with these possibilities. Thanks to many, many prayers my sister did not have a Myasthenia Crisis, she was admitted to OSUH started on an additional treatment of Prednisone while continuing Mestinon. She had minimal relief of the symptoms but continued to breathe on her own, she at one point had to have a NG (nasopharyngeal) tube put in her nose and down into her stomach for medication. She also had to suction the excessive saliva due to her increase muscle weakness and the inability to swallow. She improved very little, the major good news was she did not get worse. She was released from OSUH on Feb17th. She went home in the care of her husband and daughter with her treatment plan of Mestinon and Prednisone and lots of unanswered questions and a lot fear of what was next. She has a long road ahead of her, unable to eat due to the swallowing, everything has to be soft and pureed, and even then it is still difficult, severe muscle weakness all over, medication changes trying to find the right dosage, monthly trips 225 miles away to see a qualified neurologist, (and there may be times when she will have to travel this more often). She will have to take medication for the rest of her life. Getting her life back may be the most difficult, considering she is a Longaberger Basket Consultant and also works part-time in customer service for a local retailer, and does local craft shows. Each one of her jobs involves a lot of talking with the public, which she has always been an excellent speaker. As her sister, my heart breaks for her and there is not a thing I can do to make it go away. I feel very angry that this happened to her, sure I know there are worse things that could have happen, but they didnt, this did and I am mad. I am learning all I can about MG and the one thing I can do to help my sister is raise awareness and that is exactly what I intend on doing. The public should know about this disease and how rapidly it can affect someone and change a life forever. More research MUST be done so a cure can be found. Please encourage President Bush to make a Presidential Proclamation that June 2008 as Myasthenia Gravis National Awareness Month. Sincerely, Peggy L. Metz

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