by Robin Burkin

                                                     
I was stricken with EMS in 1983. It was absolutely excruciating. 
I described my symptoms to several doctors, but they didn't know 
what I had. They recommended anti-depressants and Tylenol for
my pain.    

Around 1986, the EMS went into a slow remission. I still felt damaged
and had bad days but the pain wasn't ruling my life.

In 1992, I had a relapse and went to the University of Texas Health Science Center at San Antonio for help. The neurologist there said he couldn’t imagine what could be causing this "constellation" of symptoms I described and suggested it might be psychological. 

I find this particularly galling since I have recently found the two "Letters to Our Colleagues" from the U.S. Drug Administration written in 1990 and 1992, which explained in detail the symptoms of EMS to the medical community. Why this leading teaching university was unaware of these bulletins, I can’t imagine.

Sometime in1996 my illness went into a partial remission. Then in January 2000 it hit me again. This time I thought I would die. I felt like I was being electrocuted from the inside out. My internist’s response to my pain was, "Well, you look fine to me." She did no tests, told my husband there was nothing wrong with me and gave me anti-depressants. She also refused to recommend me to a specialist.

Six months ago, I bypassed her and got an appointment with a neurologist. On the forms I was requested to fill out, I was asked if I had ever taken LT before. And I had. I had taken it on and off for several years in the early '80s when I had tried it for the relief of anxiety and pre-menstrual problems. 

As I drove home from that appointment, I remembered I had heard there was a problem with a health food supplement, but I didn't know what it was. So, I searched the Internet until I came across the EMS website. It described my symptoms exactly. At last, I knew what was wrong with me.

EMS changed my life. I had to quit my job as a professional singer and take desk jobs because it was so painful for me to move. I decided against having a family because just getting through the day was a big enough challenge and I started drinking because it was the only pain relief available to me.

Now, my neurologist is at least treating my pain. I’m on Neurontin and it helps somewhat. Some days are better than others.

What we sufferers of EMS have is a nasty, persistent illness, which no medical test can prove. It’s still relatively unknown even to our doctors. (My current neurologist asked, "Shouldn’t you be over that by now?")

I believe that this poisoning by Showa Denko Inc. started a lot farther back than they  admit. One lawyer I spoke with says he has successfully sued the company for a case dating back as far as 1984.

I’d like to help our cause by connecting with others via the Internet and providing answers and guidance to those who may have EMS and not yet know it. I believe there are others like me who contracted this illness before the 1989 crisis and can benefit from having this information. We need each other. We’re the only ones who understand.