"The tardive dyskinesia [TD] didn't happen overnight," says Ron. "I was undiagnosed for many years, mainly because I don't have health insurance. When my cyclic vomiting condition got really bad, I would go to the ER where they would re-hydrate me, hook up an IV with Reglan and send me home with sample drugs—mainly Reglan—because I couldn't afford prescription drugs.
"Some time ago I had a pain in my shoulder so I went to my family doctor. He noticed my legs shaking; I just thought it was restless leg syndrome. But he did some tests and told me that I had something more going on than that, so he sent me to a neurologist.
"That is when I was diagnosed with TD. They did a lot of tests and they even have a lot of pictures of me because I had such an aggressive case. The neurologist said that I was a 'real challenge' because they had never seen it so bad. At this point, they didn't know what had caused it.
"My wife and I started looking back at my medical history. We couldn't understand why I was shaking, like I had Parkinson's disease. We soon found out: After getting my medical history from my gastrologist—who I see for my vomiting syndrome—my neurologist told me that this was drug induced. It just blew our minds that it was caused by Reglan, a med I was taking for all these years.
"Tardive dyskinesia is a progressive disease, meaning that I am not going to get better. Eventually it will grow into full-blown Parkinson's disease. My neurologist calls it 'Parkin-isms' or 'pre-Parkinson's.'
"I used to be a musician and an artist; in fact my neurologist has some of my paintings on her office walls. But I can't play music or paint any more; in fact I can hardly drive. Now I am disabled and on social security. I can't work or do anything I used to do. And I just received 17 botox injections in the back of my leg to make my toes uncurl, caused by the tardive dyskinesia. I see a neurologist every six weeks and I'm going to physical therapy, but I'm only covered for 12 sessions.
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"If I had a chance to sit down with the makers of Reglan, all they would have to do is look at me to see the damage their drug has done. I can't sit or stand for more than a few seconds, my speech is slurred. Nobody said anything to me, at any time, about Reglan side effects, except when my neurologist told me. What's worse is that I am on low income and my insurance company will only cover certain drugs. My insurance company won't pay for the drugs that are helping me, but they will pay for Reglan, which has done all the damage. Go figure!
"My specialist tells me that I have to take a certain drug, but they deny me. It's like one hand doesn't know what the other is doing. And my hands are shaking."