My companion just walked in.

Within minutes of her arrival, my eyes start to droop, it's a bit harder for me to breath and I know it's a matter of luck if this will lead to another rapid crash or just end with doing less well and not being able to do what I planned for the day.

I have asked her about a zillion times not to use perfumes, body lotions, hair sprays or any other cosmetics that have the word "perfume" on them. But, to no avail. Every time she stops using that specific cream or hair spray, but rapidly finds another. Possibly she does try to buy something with the word Eco-friendly or organic on it, but I know that most of those contain a good amount of not very eco-friendly/organic material.

My mother and brother are (understandably) fanatic about anything that contains even traces of gluten. My 3 year old niece (with celiac) has learned to ask if what ever is offered to her contains gluten. But, they fail to understand that the effect of the wet wipes and fabric softeners they use has a similar effect on me.

A sale on a new fabric softener, led to an "attack" from a few neighbors together. It took me time to understand why I was crashing rapidly again, after a somewhat better period. Fortunately, the data I provided them with (regarding the potential toxicity of those substances not only for me but also for them) plus the less toxic substitute we bought them led to significant improvement.

It took many years until people realized that passive smoking is harmful. It took many years for people to understand that a serious condition can be alleviated by avoiding contact with gluten. (the first physicians to suggest this were ridiculed). It even took many years to understand that the simple act of washing your hands can prevent death after childbirth. (the physician who showed this was eventually put in an asylum, for saving the lives of many mothers).

So, I believe it will take many years before people will understand the potential harm in using neurotoxic substances in numerous household and cosmetic items.

Not every one who is exposed to cigarette smoking will become ill from it, yet it is now recognized as a significant harmful substance.
Not everyone eating gluten will have celiac, yet there is respect for those who are sensitive to it.

People who are more prone to the toxic effects of the thousands of untested chemicals in our environment are seen as "crazy". Their requests to decrease this exposure are seen as "unreasonable". At the most people are ready to admit that there may be an allergic reaction, but not any serious damage from it.

It is much easier to attribute their "unexplained illness" to the death of their beloved fish when they were five years old, then to seriously question the irresponsible use of numerous toxic substances.

Even the concerning rise in the incidence of cancer in young people. (we are seeing more and more cancers of the elderly in people who are in their 30s) are attributed to ridiculous explanations.

Do people really need to smell like an artificial field of flowers in order to be happy? Is this truly essential? Do humans have to keep on finding better and more efficient way to "fool" our senses? Isn't there enough color in nature that we have to create all those artificial additives? Does a blue or purple soap make you cleaner?

Alice i am curious because i am beginning on learning curve
In terms of symptoms, did you also notice muscle weakness after eye droop began? Would it help to have a fan on you (in theory blow away, prevent airborne exposure?). Do the symptoms cease if you physically remove yourself from the room?

Today was not too bad.
It probably depends on the level of exposure and the type of substance.
But, after my neighbors decided to try the new fabric softener I had to use my respirator and it took me a few days to recover.
The next time it happened I recognized the smell and had my son close all the windows, so it was a less severe reaction.
A fan, actually does the exact opposite, it blows it in my face.

So, the answer is probably that the time of exposure is important. If I recognize it soon enough the reaction is probably less severe. Also, I think it depends on the fluctuations of this illness ( A more severe reaction during less good periods, but I am not sure what is causing what).
I don't think it is a 1:1 relation (meaning that my illness or even more severe exacerbation are fully explained by this), but I think it does have a significant contribution.

When I worked in a pathology lab 15 years ago, I developed a fairly severe hypersensitivity reaction to formaldehyde. But, this fully resolved once I stopped working there. Some years later, I developed an allergic reaction to latex (which is not unusual for health care workers) and then hypersensitivity to DMSO (this coincided with my MG symptoms). At a much later stage, I realized that formaldehyde is in many household items which I used regularly.

I don't know if this is applicable to every MG patient, but I know some do notice worsening MG symptoms after being exposed to certain substances. I don't know what the exact mechanism would be.

Oh Alice... I do so dearly hope you have days that are relatively free of these reactions.

I canīt say I have experienced such strong neurotoxic reactions. But in the past we were young and daft enough to work as photographers mixing toxic chemicals in non-ventilated rooms without masks or gloves - our eyes would react immediately to the fumes and still we thought we were young and hence eternally invincible.

When I took MG contra-indicated drugs one year ago I had respiratory sensitivity to a lot of substances as well as breathing problems caused by the drugs themselves. I remember one thing in particular and that was the timeframe of the reaction: It seemed that permeable materials in the car would soak up the offending fumes - we would give a person a ride in our car who had perfume/other - and even 3 days later I would still be reacting on getting into our car again. I thought of all this after I read your story.

I do also remember a very strange experience about 10 years ago where something in the top part of the lungs changed. (When youīve had a mint and try to drink a cold glass of water thatīs what it felt like for a long time just breathing in normal air) and itīs since then that my milder reactions started.

I am fortunate to live out on a farm, far enough from neighbors so that we don't get expose to their stinks. We don't put out toxins ourselves.

The formaldehyde thing is a problem. I teach anatomy. I am sure that it sets off my MG when we get out dissections specimens. Our maintenance guys put me in an awesome ventilation system that helps a lot. I don't have to dissect stuff every day. I also bought lower formaldehyde specimens.

I will be vested in the retirement system in 2 1/2 years. I will be eligible for disability retirement then as well. If I quit, I lose my insurance and my chance to retire. If I go back into veterinary practice, there will be a whole different set of toxins.

I guess I am screwed.

I think we all have a limited ability to control our environment.
If we don't want to go into a bubble we have to accept the fact that we can't control what we are exposed to.
I try to do my best where I can. some people are very understanding and some less. My husband would joke about it at first (saying that I have to work as a police dog) but now takes it much more seriously. (he is a scientist and he had to get proofs for that).
But, I realize that just like I can't control this illness, I can't control the entire world.
I think my increased awareness to the role of nutrition and environmental exposure is of benefit to my patients.
I am not an environmental activist (there is a limit to what I can do with my limited time and energy) but am very supportive of those who are.
I admit that in the past, I didn't understand the importance of this, and therefore I can understand why people don't. You just can't be aware and involved in everything.
I know I have exposed my sons to a lot of "junk food" without realizing it. I would fall for labels saying "no preservatives" without realizing that those foods contain other additives. I try to educate those around me as much as I can. I loved cleaning detergents and had one for each task. Again, I was fooled by the labels and pretty pictures.

Thanks, but there is really no need for either.
It is very easy (and even not extremely expensive) to find soaps which are made from natural substances.

I have to thank those who were smarter than me and created a significant market for those products.

My husband and sons were very glad to switch to those for me.

I am also (fortunately) not sensitive to everything. I can't prevent my patients from wearing the perfume or cosmetics they like. And I am not going to stop working because of that.

I am also not going to stop hugging my niece, even it sometimes makes me feel unwell.

I also don't think I can blame my entire illness on that.

It's just that when you cherish every better/productive moment that you have, you don't want anything to take it away. And it makes you a bit angry to think that you may have had a few more of those better days if it weren't for some fabric softener or cosmetic.

I've been allergic since I was a toddler. Seriously, I guess. Asthma. These awful drops they put on sugar for me to take. ICCCKKKKKK!!!! Mom had to remove the curtains from my bedroom. I couldn't have stuffed toys or a bedspread. She had to wash the sheets, blankets, and mattress pad weekly in hot water. I couldn't have carpet or rugs.

I've ALWAYS been sensitive to anything that smelled. I avoid the perfume areas of department stores and stay away from the laundry sections of grocery stores and Wal-mart. Everyone has always told me that my nose is tooooooo sensitive.

I started getting allergy shots at age 17/18 -- continued them til my early 30's. They did help -- I was able to at least work in a building that was cleaned with chemicals. They used to warn me if they were going to paint or use chlorine to clean bathrooms or spray pesticides (even before I was dx with MG) -- I could use a sick day if needed.

Allergies and autoimmunes, IMHO, are so closely related........the body going HAYWIRE and attacking something benign. Any stress makes ME worse.......illness, getting upset, ALLERGIES.

So, long story short, Alice, it doesn't surprise me at all that these perfumes, strong scents, chemicals are making your MG misbehave. It "ain't fair" -- but, it is, IMHO, all part of the same "game".

I think Annie and I have mentioned this before (excuse my particularly bad brain fog today) -- but, we DO "try" to "control" our environments. I am a FANATIC about what comes into my house (chemicals). I'm the same way about people who get into my car. Our house gets a yearly termite inspection -- but, the guy knows NOT to spray unless he tells me first so I can GET OUT!! I use borax and sugar/honey around the perimeter of the house to control ants.

I found something that really works for alergies. A good air purifier. I am alergic to things as well. This really helped all my symptoms. I got the kind you can re-use the filters by cleaning them. Hope you can get one, I purchased my from home depot. ginnie

Jana, I am just like you with severe asthma. Any smell can set it off. I have not had a bad attack since I replaced my household cleaners with eco-friendly cleaners. Even the smell of a whiteboard marker will start me choking.

My skin is just as sensitive too. I can only wear cotton or have cotton touch my skin. I get eczema or contact dermatitis easily. I have finally found a watch band that does not give me a rash, it is made of nylon. In fact, my MG symptoms happened after surgery where they used mesh to repair a herniated organ. I keep wondering if that somehow brought on the MG.

Ginnie, I use the washable air filters too and I can feel the difference. I also have my duct work cleaned every couple of years and can feel the difference then as well.

I am probably not as diligent as I should be with the food. I only buy organic when it is on sale and I have to admit I eat frozen prepared meals.

kathie