As I finish this article right after Memorial Day, I feel blessed to be part of such a wonderful board of directors. For those of you who do not know, the Myasthenia Gravis Foundation of California has an unpaid board. We receive no compensation with the exception that our quarterly board meetings include sandwiches and small bags of potato chips.
Although myasthenia gravis was not mentioned in “What’s Wrong with Me?,” an article by Meghan O’Rourke, that appeared in the August 26, 2013 issue of the New Yorker magazine, it plays a huge factor in the linking of all autoimmune diseases under one umbrella category.
In the year prior to my diagnosis of MG, I was on Qvar 80 inhalers, Fluticasone nasal spray, a Flovent 250 inhaler, and received the over 65 flu shot, the Prevnar 13 pneumonia shot, and two Z-Pak antibiotics for bronchitis. On January 9, 2015 I had major lower back surgery and was on Oxycodone daily for pain.
On Sunday, October 26, 2014, the Myasthenia Gravis Foundation of California held its Fall Meeting at the Crowne Plaza Hotel at Commerce Casino. Forty-six patients, family members, staff and volunteers attended the meeting.
Michelle Desmond was born with post-synaptic secondary-fold congenital myasthenia gravis. But at first the doctors thought it was lipid myopathy carnitine deficiency. Early in life, she and her family faced many challenges: numerous muscle biopsies, extensive neurological testing and frequent hospitalizations. Michelle’s parents had to feed her through a gastrostomy tube and maintain her breathing through a tracheostomy tube.
I take Mestinon every four hours and it helps my MG but it destroys my stomach. Any recommendations? I don’t want to take anything that will interfere with the Mestinon or that will exacerbate my MG. Are over the counter drug a possibility?
Maybe it’s the prednisone, but I have a hard time falling asleep. I’m fine once I’m asleep
and rarely awaken in the night. Also, during the day I often feel jittery and nervous. I’m
losing weight even though everyone tells me you are supposed to gain on prednisone.
I just attended a support group for MG and hear other patients talking about IVIG. What is it? Is it superior to the Mestinon I’m taking now. What does it cost? Does insurance pay? I live in Glendale.
Feeling tired, sleepy or fatigued may be signs of an underlying sleep disturbance. Other clues include snoring, waking up at night, morning headaches or difficulty concentrating. Poor sleep can affect a person’s quality of life, reduce productivity, lead to accidents (by falling asleep at the wheel) and worsen underlying neurological conditions (such as myasthenia gravis).
I have been lucky enough to attend the Myasthenia Gravis Foundation’s Annual Gala Dinner for the past fourteen years. (I happen to know it is fourteen years because my first dinner was just a few days after my second daughter was born). While I have enjoyed all the dinners, I have to say that this year’s dinner was my favorite.
On Sunday, October 26, 2014, the Myasthenia Gravis Foundation of California held its Fall Meeting at the Crowne Plaza Hotel at Commerce Casino. Forty-six patients, family members, staff and volunteers awaited the panel of doctors which made up of neurologists who specialize in treating myasthenia gravis.