MCS sufferer requests help

[Guest guest]

Multiple chemical sensitivity sufferer requests help by Heidi ,

Townsend Letter for Doctors and Patients > Dec, 2005

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 , Group at Keller

www.ctrealtor.net