Of courser I can't use anything scented or regular cleaners, soaps, laundry product but I have found out (the hard way) I can't use regular hand sanitizes, toilet paper, tampons.

This is hard on my family also, we are beyond just using products that are better for the earth, we have to be careful of EVERYTHING that comes in our house and I get near.

I HATE MCS!!!!! It's not fare.
I need to go to the Dr to get pain meds for my FM and I keep putting it off because there is something in there office that bothers me, no the Dr doesn't ware perfume, I can't even really smell anything.

I couldn't go to my DH's office for almost a week (and I have to help him every afternoon) because the bank 2 stores down was staining some book shelves.

I'm not sure why no one wants to answer my question.
I just wanted to be able to "talk" to others that are doing with the same issues.

My MCS has improved a little over the last couple of years. I'm very careful to avoid those things which seem to affect me. For about a two years I couldn't ride in an automobile without the windows closed and re-circulated air. I couldn't go to the mall or anywhere around where people may be wearing fragrance. I'm still affected, but the reaction is rarely as severe as in the past.

I'm not exactly sure why I've seen some improvement, but what I have done in the last few years is take CoQ10, L-carnitine, B complex vitamins and milk thistle.

I've tried to find physicians familiar with MCS but haven't been successful. Some folks have said they've experienced some relief with glutathione treatments and I've heard of some success stories with NAET. I hope you find something to help you. I understand how miserable and hopeless you can feel, but I'm of the opinion that MCS is a symptom of a primary condition that hasn't yet been diagnosed. If you keep pursuing an answer to your primary condition and improve your general health then it may very well help you get over your sensivities. At least that's been my experience. I wonder how many others have more severe symptoms of MCS when they are experiencing a decline in their general health.

I WANT TO TALK BUT I NEVER GET ANYWHERE EITHER I DON'T THINK THE DOCTORS EVEN REALLY KNOW I HAVE SUFFERED FOR SOOO MANY YEARS AND PEOPLE " DON'T " UNDERSTAND, I THINK WE ARE ALL IN THE SAME BOAT AND NO ONE TO HELP US. PLEASE SHARE ANYTHING YOU KNOW BECAUSE IT IS SCARY, ESPECIALLY WHEN THE HEART BEATS SO FAST AND I GO NUMB IN MY LIMBS AND HEAD.

I've had the same reactions as you with rapid heartbeat and I get numbness and an immediate and intense headache. Some of these symptoms are very scarey and I'm sure they can be dangerous - as you never really know how severely you'll be effected.

What have you tried so far? Have you heard of the pharmacy in Kent Washington which has a protocol for treating this with glutathione (nebulized form)? I believe it's call Key Pharmacy. I have thought of contacting them, but I haven't yet done so.

I have tried the glutathione pills from here for one month, not sure if it helped or not but I', going to try it again and see if it helps (I'll let you all know if I think it does help).

About the numbness, I have had it going on SO much for about a year that DH and I find it funny (what body part is numb now).

I've been thought SO much stress in all my childhood and all of being a teenager that by the time I met my DH I had the begins of a stomach ulcer. So I learned (the hard way) to only worry about things "I" can do something about, I'm not taking this MSC lightly, I'm just dealing with it with a since of humor. Stressing about it isn't going to do me any good.

I also get the rapid heartbeat and I get numbness and an immediate and intense headache. I'm learning what stores I can't go to.

I bought a Pulse Oximeter that I keep in my purse, if I get worried about oxygen intake not being enough I can put the oximeter on my finger and check my O2 saturation & heart rate.
I got this one,
http://www.clinicalguard.com/finger-pulse-oximeter-octivetech-300c-p-37.html
I bought mine from Amazon.com

mom2many: Is your pulse oximeter accurate and have you had much trouble with it. I am very interested in getting one. I notice they have others more expensive.

K

I can't say for sure if my oximeter is accurate, I have never checked it with the Dr.'s or anything. I have never had any trouble with it, had it for about 7 months. Bad thing is when I'm "bad" I don't remember that I even have the oximeter so I never checked my pulse for O2 when I'm having a bad reaction.
I also don't know at what O2 level is bad, if you drop below what %.

Hi Mom: I have MCS in it's very extreme form. I can't travel to see family. I haven't seen my mom, who has alzheimers for 5 years. Or my daughter in Ohio for 5. Now my son hasn't come for 2 Christmases. He has serious girlfriend and is busy with his life, I guess. I have no other family to see. My brother and family are in Atlanta area like mom and they never come out to Colorado. So with the travel and limitations of people being toxic to me everywhere I go (or things in stores) isolation is my biggest problem, I guess.
My biggest reaction to the chemicals is the migraine. I want you to know that I have been taking NADH for about 4 or 5 months and I really think it is helping me. It is supposed to help with the blood flow as well as mental clarity, etc. I have not refilled my migraine medicine since April. It is a miracle. I have a better attitude and smile a lot and that may help. I can still get a migraine if really exposed to something, but I am doing so much better. Also I was getting "rebound" headaches from the migraine meds. I made a hard choice to try very hard to avoid that medicine and after these months I am getting by with tylenol or ibuprofen. I still am afraid to travel and have all my other symptoms of fibro, but taking the severe sometimes 7 day migraines away is a miracle. Have you ever tried NADH? I do think it has something to do with it. It took several months to really help.
So I just wanted to offer that and to say though I am not always here at computer because of my eyestrain, I care about everyone and am lonely and try to help when I can. Hugs, to you Penny

I did try NADH but only for a week, I have read that you have to try it longer, like a month or so. So I'm going to try it ago and stick with it longer, Thanks.

Sorry you can't see your family, it must be hard.

I take Midrin for my headaches/migraines. It's the only thing that helps me and I have tried all the other migraine meds.

I'M NOT SURE HOW TO TELL YOU ABOUT MY NUMBNESS IT IS MORE LIKE I'M TO WEAK TO MOVE MY LIMBS THE BACK OF MY HEAD GOES NUMB AND I FEEL INSTANT SICK I GET DISORENTED AND MY EYES DON'T FOCUS SO WELL THE WORST IS THE HEART RATE IS VERY FAST, I NEVER KNOW WHAT SMELL WILL SET ME OFF
MOM

How bad is my MCS?

It started when we bought a new sofa and had it aired in the warehouse for a month before delivery, but within 20 minutes of delivery, I was dizzy, my head was pounding, my nose and rectum started to bleed, and then my pulse dropped. I called my allergist and he told me I was going into shock, and to get out of the house NOW.

We had to put the sofa up on blocks in the garage, which is a separate building from our house, and blow a huge fan on it for a week before I could be around it.


Now we only buy second hand furniture. Even a 4 inch square sample of flooring material will cause a reaction and I cannot be in the same house with squares of vinyl tile. A new shower curtain must be hung outside for 3 days before it can come in the house. I cannot go in stores that have any new clothes or furniture in them and must order from catalogues and then wash items immediately. I could not go to the library for 2 years after they built a new one, and had to change eye doctors when he moved to a new building. My acupuncturist just moved to an office that was remodeled, so I cannnot go to her for two years.

When we had to buy a new bed, the one piece of furniture you can't buy used, we had that aired for 35 days in the warehouse, to no avail. I had to sleep on the sun porch with the door closed and the air vents turned off for 77 days, until I broke down and went to an alternative clinic and had an NAET treatment. I was skeptical, but it worked, and I've been able to sleep in the bed ever since.

I've found no supplements that have helped me. I was told MSM would help, and it helped my allergies, but not this. I do take pantotheine for my adrenals, but still cannot tolerate even one small piece of plywood in my vicinity.

klutzo

hi all,
last year was very bad for me.im still not sure what happened to me,but i was coming off amitriptyline 50mg,that id been on for 14 years.

last year we decided to get rid of the carpets and lay laminated floor boarding.it has a sort of foamy under lay with it.

then something happened to me,and i had the most terrible breathing difficulties,and what a paramedic described as panic attacks.i thought i was going to die.

i went sort of paranoid about going outdoors.it was really horrible.my grass allergy was bad too.

i did find out that last year was described as the worst year for anyone suffering from hay fever.and also a woman at work had used a chemical from home,at our place of work.it was caustic soda.so alot was going on back then.

also id just started to become sensitive when walking down the washpowder isle,in our supermarket.this hadnt been a problem to me before last year.

this year im taking allergy tablets,and so far so good.

ive trained myself to take control of any sudden situations that may arise outdoors due to odours/smells.

i close my eyes,slow down my breathing,and tell myself...dont run. this seems to work right now.

my daughter has simular things going on, and is a asthma sufferer,also has psoriasis on her hands and feet.this gene is from my dads side of the family.bless him.

my daughter complained of smelling a horrible smell,everytime she went into our bathroom.the smell was of sewage.

i keep a very clean bathroom and couldnt detect the smell myself.

but this year the smell caught up with my sinuses,and it turns out to be a real thing,not all in the mind.

i live in the uk.

part way up my houses roof, there is a pipe that sticks up, and it is to let vapours out of the sewage pipes.

we have a fan on the bathroom wall to suck out steam from the shower.

it turns out that on windy days sewage vapours are being blown from the sewage pipe outside on my roof, and the smell is wafting in through the bathroom vent,and coming into my house.

isnt that disgusting.

my daughter is releaved to know that the smell has a real cause.she insists the bathroom door remains shut,as the smell goes into her bedroom if the door is open.

this sensitivity to smells can be useful at times,but wears a person down alot doesnt it.

take care all,love fran