Coping With Myasthenia Gravis

My wife has had MG for eight years, from the age of around 23. It affected her throat and legs at first and only sporadically her eyelids. She had the thymectomy and is currently on prednisone (20 and 10), cyclosporine and Mestinon, as well as calcium supplements.

A colleague at work told her just today that her brother got the diease the day after a flu shot. He woke up and his eyelids would not open. He’s now on steroids, but still has to walk with his head tilted back. This reminded my wife that before she got the disease she also had a flu shot. I remember this quite well because after the flu shot she developed pneumonia and a very deep, ragged cough that — we thought — caused great weakness in her voice. Unfortunately we continued to suppose that was the problem — aftereffects of pneomonia — until she almost drowned from weakness in her arms about four months later. We began the tests but another four months passed before the diagnosis arrived, as the first doctor (general practitioner) stubbornly insisted it was depression and so prescribed anti-depressants (which we threw away).

Anyone reading this is probably already affected by the disease, but I would wonder indeed if there is any causative link between flu shot triggers and this disease and whether other sufferers may also have noted any such coincidence.

One other thing. Recently her neurologist asked her to get off cyclosporine and begin treatment with Imuran. My wife did so for five or six days, but each day suffered pain in her upper abdomen. She went off Imuran and, about a week later, notified her neurologist. Her neurologist (a true specialist devoted only to MG) insisted she go back on the drug or find another doctor. The next morning, Dec 23, around eight o’clock my wife took a dose of Imuran before heading for work. By ten she was suffering the same pain, and left work for the hospital. By the time she arrived at the emergency ward she was on the floor and unable to speak. Some hours later, and after a morphine dose, the doctors concluded that she had had gall bladder pain, and after a CT scan that night followed by an ultrasound the next morning the surgeon reported that she had probably passed “bile sludge” through her gall bladder duct.

Lastly, a drug called Actonel was prescribed for her osteoporosis She took it for some months, but then began to feel excruciating pain in her jaw, which the new neurologist ascribed to the Actonel. She has since gone off Actonel but the pain persists.