Devastating Personal Experience
I had a heart stent implanted. The following day, I could not walk, the pain was too much. My doctor said it was rheumatism. I said I didn’t have rheumatism yesterday to no avail.
The pain in my legs subsided. I was treated with Mestinon and Prednisone for the next 3 years with no further improvements.
An MG crisis
In 2002, I had my first regression. It happened very quickly. I could not control my eyelids, had trouble chewing, could not swallow my own saliva, and ended up on life support intubated for over 30 days.
I was on a Prednisone drip with a blood draw every 4 hours! Then I received my first plasma pheresis treatment connected to a big device that removed the T-cells in my blood. My strength returned somewhat and was released from the hospital.
Back in the hospital again
However, I did not make it home because I started regressing again. I found myself in another hospital for over 30 days again, intubated, on a Prednisone drip with no improvement, then received plasma pheresis again. (Note: On every visit, I told my doctor, "My system is rejecting the heart stent..." to no avail).
After five 30+ day hospital stays, I recovered to the point where I was able to live at home on high Prednisone pills. The Prednisone dosage caused severe osteoporosis of the spine and a collapsed hip.
The Prednisone also took my mind. I could not walk or talk. Could not figure out what word followed any word however I was able to read and write. My brother got involved with my neurologist and asked to put me on a drug from Canada... I can’t remember but, sadly, I was allergic to it.
A miracle that came too late...
Finally, my brother read about Cellcept (Mycophenolate) and that brought me back to life. I lost 8 years of my life and all of my properties.
I’m 80 years old and still can’t get up if I fall. I’m a wartime veteran and recently found out I had 2 strokes during those times. My neurologist did not pick up on the strokes, even though I could not walk or talk. (Note: 24 years ago neurologists had very little info on myasthenia gravis).
Looking back now
I was semi-wealthy at that time and now barely surviving on SSS. Myasthenia gravis was, and still is, a condition caused by our bodies rejecting something in our bodies. The pharmaceuticals push pills and not cures. Prednisone costs 8 times more than Mycophenolate and is used for transplants not being rejected.
Had I been put on the cheaper drug, I would have been far, far better off. I do not blame my doctors, I blame the pharmaceuticals for greed. For those just being diagnosed with the disease, please research a noted neurologist.
Live long and gain respect, an awe for all life, down to the single cell.
Have you found an exercise routine that works for you?
Join the conversation