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Hi there! I am Sharon, (a.k.a. "Goldenfire") a mother of 2
(boy, Josh, and girl, Amber). I was diagnosed with Myoclonus
and EMF Sensitivities due to MCS/EI in 1989 when I was 7 months pregnant with my daughter. I chose
to share my story with others in the hope that anyone in similar circumstances knows they are not alone.
It started one night when my legs began twitching. My gynecologist told me this was nothing
to worry about. The baby was probably lying on a nerve. Well, guess what? It wasn't anything
that simple. One month after she was born I started having full body movements. I went to my family doctor and
he said, "I've never seen anything like this before. Let me do some research." He did a lot of checking
and realized I had Myoclonus, but didn't know anything about it. He sent me to several different doctors and clinics
(Baylor College of Medicine-Houston, Mayo Clinic-Jacksonville, Mayo Clinic-Rochester, and Oschner's Clinic-New Orleans). They all agreed with him, but said it was psychosomatic. I was creating
these seizures on my own. They each tried their own medications to see
what would work the best. They tried Clonopin, Depakote, Sinequan, Amitriptyline,
Tegretol, Surmontil, and Buspar. If they worked at all, it was only for
about a month or so. Then my body adjusted to them. Currently, I am taking
Lamictal and Keppra at the maximum dosage levels for both. I had Diazepam added to my diet of pills on an "as needed"
basis. I had Mirapex added at night time due to restless leg syndrome when trying
to go to sleep. The only problem with that was that I lost 25 pounds (that
I didn't need to lose). The doctor immediately took me off of it.
During all this time, I was living in a mobile home that was set up over a Natural Gas main.
We lived across the street from some road construction and fields where crop dusting was going on. There was an
electrical transformer set 10 feet outside my bedroom window, too. My husband, at the time, and his family agreed
with the doctors which caused tension at home.
Through friends, family, and church members, I was given another avenue of hope. There was a doctor at the Environmental Health Clinic - Dallas in Dallas, TX by the name of Dr.
William Rea that specialized in chemical sensitivities. My grandmother paid for me to go there for testing. This
brought enormous relief to finally be able to put a name and reason to my seizures. Dr. Rea informed me NOT to
return to the mobile home for fear that it would eventually kill me. So for the next few months, I lived with my
parents and didn't venture away from the house. I was not to have contact with any people other than my family
because it would cause reactions. Upon returning from Dallas, I still did not receive any support from my husband
nor his family. They still believed the original doctors's assessments. Later, my grandmother and I went looking
for a house that I could safely live in. She then purchased it for me. All the while, I was fighting with Social
Security trying to receive disability. It came to the point
where I had to hire an attorney to help me fight. This finally came to pass and as soon as I received the back
pay, I filed for divorce.
A few years later, I underwent an upper GI study and was given Demerol and Versed to relax
me for the test. Upon awakening, I went into a 4 hour seizure while still in the hospital. The neurologist I was
seeing at the time, also believing this was psychosomatic, waited until his patients were gone before venturing
down to my hospital room. He then instructed a nurse to give me an injection of "medicine" which turned
out to be just a saline "placebo". With regards to the "placebo", my seizure was almost to
the point of being ended when the saline shot was given. I knew it was a placebo because of the difference in the
"sting". My mother later came into the room and informed me that he told her & several nurses that
he was going to do that to see if it would really work. (Since it was all in my head, anyway!) After I returned
home, I started having problems to the point of constantly falling down when I stood up. I went back to see the
doctor and all he did was increase the dosage of my current medication to the point where I was walking around
like a zombie. Needless to say, I no longer use that doctor. After looking in my current phone book upon moving
into a new town, I discovered that my original neurologist was working close by. I immediately called him and set
up an appointment. I had not seen him in 10 years, but he still remembered me. That was a big plus in my favor.
We are back at the experimenting stage, but things are really starting to look up.
I even had the fun of visiting another neurologist once for a migraine. Guess what? Don't give me
Imitrex! I went into a full one hour seizure from it, too. I now carry a list of medications I can't take as well
as my current list of meds -- dosages, too -- in case I forget what I am on. I even have a list of food allergies
& surgeries that I have had. (Another good idea - from my mother!) I currently use a
Medic Alert bracelet.
If you are having problems, don't accept what just one doctor tells you. Please check with several
of them. If you are still having problems, keep pushing on until you find the answers you seek. The exposure to
chemicals, EMF, and other outside influences has left me with some permanent nerve damage. But, I am constantly
looking for solutions and pray that one day the environment and I will be able to co-exist harmoniously. I recently
remarried and my husband is behind me 100% and supports me in every way possible.
Thank you, Tom!
And thank all of you for reading this .
On my links page and here, I have included a CAUTION SIGN which you may feel free to copy and use on the front of your house like I do and also a LETTER FROM EHC-D regarding Dr. Rea's diagnosis. A few years later a NEWSPAPER ARTICLE was written about me and several
other friends of mine in town by a fellow MCS sufferer.
May God bless each and everyone of you!
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