Tuesday 10/14/2008 3:52:11am Name: Robert M. Henderson Homepage: E-Mail: Bobhenderson5@cs.com Referred By: Just Surfed In City/Country: Dowling Park, Florida, USA Comments: Updating my story. It has now been 30 years since I was first diagnosed with "hypersensitivity to chemicals", I didn't hear MCS until the early 1990s. I was finally referred to a real doctor who knew about MCS about three years ago (or at least one within 100 miles and who was affordable). Turned out he had MCS himself and so did his wife, so he's a believer. At that time I was experiencing an average of 23 "crash and burn" episodes per month. After a series of tests identified severe deficiencies in minerals and vitamins, I was put on a regime of supplements and saw my "crash and burns" steadily decline to an average of only five a month by May of 2006. In January of that year I had been diagnosed by my local clinic with a nasal infection that did not respond to the usual treatments and was referred to a ENT specialist (or rather his PA), who confirmed the "common infection" diagnosis. This was followed by a couple of months of various anti-biotics with no visible effect, and I finally got to see the Dr. himself, who promptly declared "That's a cancer", grabbed a hypodermic and started to shove it in my nose. Something told me this wasn't a good idea and I slapped his hand away rather hastily and said, "Does that stuff have epinephrine in it?", to which he replied "Yes. Is that a problem?". I explained that if he would look at the information I provided, he would see that epinephrine was at the top of my list of no-noes. To make a long story short he changed to the right stuff, took the biopsy, which turned out to the positive, and I never saw him again. My MCS doctor referred me to an ENT specialist who told me I was in luck as my particular nasal cancer was very rare, but the best man for the job was in that city. After seven weeks of radiation the cancer is gone, though the memory lingers on and some of the side effects (impairment of taste for one) are unpleasant. Anything with pepper sets my mouth on fire and I have eaten my last coconut cream pie. During the month I had to stay in the city for radiation, I had thirty-three "crash and burns", an all time record. Two years later I am back to five or six most months. In summation, I had a cancer for five months, seven weeks of radiation and no more cancer, but I still have MCS and have had it for over thirty years. There has been some improvement, but I still have it. One bright side is that there in now underway a study of chemical effects on babies where doctors will follow a group of newborns from birth to, I think, age twenty-five. I'm glad to see that and look forward to hearing the results of this study. I'll only be a hundred and one when it is finished.

Thursday 08/31/2006 1:51:14pm Name: Briony Homepage: E-Mail: Referred By: Just Surfed In City/Country: Australia Comments: My mother has MCS. I have just read an entry by a woman from the US and am quite disturbed by her comments regarding her husband who suffers from this horrible illness. I obviously do not know her personal circumstances, however her comments about her and her childrens "restrictions" because of her husbands illness made me rather angry. How about how her husband feels? Having his entire existance taken from him, unable to leave his home and having all that he enjoyed, like a normal person, ripped away from him? My mother is also restricted to the home and only able to live in a select few rooms at that, she has lived like this for the past 7 years. We have only 1 bed an old wooden table and chairs and our t.v in our house because she simply is not able to tolerate anything else in her environment. Our family has broken up too. My father left only a year into her illness and caused absolute hell before he left because he simply could not understand the severity of the sitation. One brother has almost "dumped" my mother, a mother who when he has always been in need, helped him through his tough times. I always thought family, when you are in need, would always be there. Friends come and go, but family should always stick by eachother. I care for my mother, I have restricted my life and cut all that I enjoyed and knew to be "normal" out of my life, because I believe if you truely love a person, you will sacrifice all that you can to help them through the toughest, most horrifying years of their life. Who knows if she will ever get better? But is it too much to stick by a person who is living in such turmoil?

Tuesday 05/02/2006 8:53:19am Name: Sue Jones Homepage: E-Mail: trashbucket@cox.net Referred By: Just Surfed In City/Country: USA Comments: My husand has MCS. It has broken up our family. After 6 years of trying to help him create a safe place to live, he finally turned our home into a prison. There was no room for the rest of us to live our lives. We were so restricted that we were going out of our minds. He has turned against me and is mean. This is not my fault and the fact that he has no idea of the pain that he has caused the people who truly have loved, stood by him and supported him the most in the world is heart breaking. I have lost my husband and our children no longer understand this man that they knew as their loving and caring Dad. We tried to create a 3000 square foot area for him to go into when he way ill that was state of the art. It had everything he thought he needed. He got to the point that he could not move forward and just kept restricting how the kids and I lived. We did everything we could but it was never enough. Finally we moved out. What is one to do?!!!!!!

Tuesday 05/02/2006 8:31:07am This is a private entry. If you are the owner of this guestbook, you can press the button to view this entry.

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