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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.

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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.

Still alive and kicking

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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