My daughter, 24, is dying and no one is able to help us. I had never heard of MCS until a few weeks ago, when my sister in Florida emailed me to say she had read something about MCS, that it sounded like Kim, my daughter, and I should check it out.
My daughter's problems started over a dozen years ago, and have steadily evolved. Her first "episode" is of unknown origin. My husband and I came home after an evening out, and checked on Kim in bed. She looked like she had been beaten up. Her face was swollen and bruised and almost unrecognizable. We still have no idea what caused this. Seemed to be allergies. Over the next few years she would have repeated swellings in her face for seemingly no reason. The swelling would be so extreme that small blood vessels burst, resulting in bruising. She began to see an allergist for testing and subsequently shots. Mold, dust, etc, etc. High school was especially rough. One day the swelling started in school, and a counselor thought we were abusing Kim. Despite Kim's protests that she was fine before she got to school, the counselor called the authorities. They wouldn't believe that we had not harmed Kim, and sent someone over to visit us at home. The man was skeptical, despite our explanations and Kim's. I finally ran my finger over the top of the hutch, rubbed the dust under Kim's nose, and told him to watch. He said he'd never seen anything like that in his life--in front of his eyes Kim's face began to swell and bruise. Her chin was always the most affected, and her lips. The rest of high school passed similarly; there was remodeling being done and the smell of the paint bothered her. This was also during the time that the local dump fumes were being carried into the building and the town was in an uproar. The dump was later capped and closed, but not before we had to remove Kim from school on a permanent basis and home school her for her senior year.
Over the next few years, after completing her allergy shots, the swelling and bruising ceased. Kim developed asthma instead. We could not figure out why, nor was there any rhyme or reason to her attacks. Exercise doesn't affect her as one would expect, and she can just be sitting somewhere and suddenly have an attack. Doctors have tried to blame it on our pets, but we point out that she's best at home. The animals are not affecting her. During one period of disability from work she spent a couple of months at home, exclusively surrounded by animals. She was fine until the day she left the house to go to the doctor for an appointment.
The past three years have been a nightmare, and getting progressively worse. I'm afraid she is going to die because no one understands or can help her.
She works for a supermarket chain, mid-management. She went months with no problems, then was moved to another store. Episode after episode followed--mostly just asthma attacks. It was decided that the ventilation system in the store might be harboring something that bothered her, so they cleaned it. She was fine after that. Kim was transferred to another store, and had more problems. The asthma attacks became worse, and Kim was taken out of the store a couple of dozen times via ambulance. She started to notice that the attacks were brought on by smells. Perfumes are the worst. Paint and just about anything else can trigger this as well.
Kim has been on so many medications for so long I don't see how her system can take much more. This past December, during another hospitalization, she was on massive doses of IV steroids. After two weeks she was unable to walk. The doctors wanted to put her into a nursing home for rehab. I refused, and drove her to the Mayo Clinic in Florida, hoping to get her accepted as a patient. She was, but has yet to return. I knew it was the steroids that caused the muscle weakness; I was right. Getting her off the steroids saved her mobility.
She has had many close calls. She'll leave work ok, and start to feel "funny" on the way home. She's been stopped numerous times by law enforcement for erratic driving and ended up in the hospital. Her one goal during an attack is to get home. That's where she feels safe. Luckily she's never had an accident so far, but I'm sure the day will come. When she's at the height of an attack she's disoriented and confused.
Kim had a baby in July. During the pregnancy she had a few episodes, but stayed home for the most part. Now she's back to work, and getting worse. Three weeks ago we went out to dinner, and a man had chest pains. The ambulance came and took him away, but not before he had vomited. The cleaning solution that the staff used to clean up caused Kim to have an attack. I could see she wasn't going to last long, so we finished up dinner. We tried to get Kim outside to a car to take her to the hospital, and she collapsed. My husband and sister-in-law stabilized her while I called for an ambulance. (My husband and I are EMT's, my sister-in-law is a Paramedic). Vital signs were not good, and she wasn't moving any air. She was confused and disoriented. She got to the hospital, was kept for a few hours while she was observed, and released. She did have one more incident while at the hospital, which was triggered by the cleaning cart outside the door. Oxygen, breathing treatments, steroids. The usual.
Two weeks ago she called me from her car. She had been to an appointment with the baby, and the lady had perfume on. Kim was trying to get home. She assured me she could make it; she was two miles from the house at the most. I called home to alert my son (14) to look for her, and headed home. It took me 15 minutes to get home--no Kim. We managed to get her on her cell phone. She was lost. We told her to pull over and park. It was another 15 minutes before we found her. My husband called the police to help find her. We found her a few miles from home on a road that is not on the way home by any stretch of the imagination, parked as she had been instructed. She had no idea where she was or how she got there. I called the police to update them and order an ambulance. Kim was incoherent for the most part. Totally out of it. One of the officers had oxygen, so we hooked her up to that while we waited for the ambulance. When the ambulance arrived there was no time to wait for a paramedic intercept, they basically loaded her and went straight to the hospital. At the hospital Kim failed all the questions. Wrong birthdate, wrong day of the week, and so on. She kept insisting she was late for school. After some breathing treatments, IV steroids, and oxygen she was ok to return home.
Yesterday we received a phone call from her manager at work. He used her cell phone to contact us. He had found Kim wandering around, dazed and confused and wheezing. He admitted it seemed as though she was high on drugs, but he knows her condition and knew that wasn't the case. He had called an ambulance. He told me when she was lying down, before the ambulance came, that her eyes rolled back in her head and she passed out for a few moments. According to the paramedic, her pulse was up, respirations were up, audible wheezing, blood sugar 64, and the scariest--pulse ox of 74. That's darn close to dead. Kim was again very confused and incoherent during most of the long ambulance ride, but somewhat more "normal" by the time she got to the hospital. While at the hospital the lady in the next cubicle sprayed perfume. Kim was later admitted, and remains there. She's on oxygen, breathing treatments, and IV steroids again. They're saying she's anemic. No surprise. And a bunch of other things. But I think they're missing the whole concept here. "MCS" is a "figment of our imagination." The pulmonologist who has been treating her for two years doesn't seem to take this seriously. He thinks steroids are the answer. Steroids and drugs. Those will kill her themselves. To keep her breathing she requires massive doses of too many things.
She's getting progressively worse. The memory goes. No rational thoughts during an attack. "I'm late for work. I'm late for school. I need to call my Mommy." And so on. She has a baby to support, yet allowing her to work or drive is dangerous. She doesn't recognize her own mother, me. (She still lives with us) The incidents are coming more often and are more severe each time. She's going to die if we can't find someone to help us!
What can I do, where can I go? HELP!
Heidi Evans
Evans Group at Keller Williams
275 Greenwood Avenue
Bethel, Connecticut 06801 USA
203-744-7355
www.ctrealtor.net
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