This'n That #10 - Mysterious Chemicals?

[Nancy]

Bren,

Thanks for reading then taking the time to go into such detail!

First of all, there are very few medical institutions in the US or the world, for that matter that are experienced with MCS... it's cause and effect. In fact, the Chemical Injury Network is pushing for "standards of diagnosis" and have been for years.

This is complicated by the vast differences in patients. The "whys" are so diverse it makes the answers far from simple.

Most people start to exhibit symptoms of MCS as a result of a "one dose" exposure to some toxic substance. Others seem to start with multiple symptoms as a result of years of exposure. We have something here in the US known as "sick building syndrome." You may hear off and on of people in an office building suddenly complaining of breathing problems, headaches, 'strange smells' .... the building is evactuated and shut down for investigation. Odds are those who investigate come up empty, with NO clear cut reason(s).

Personally, I feel that painting the interior of my home in Northern California started my life long journey with MCS. Why? I have no idea, other than weeks of exposure and not realizing what was happening, plus sleeping there...... in other words, no escape from the fumes.

My "drop dead" asthma began shortly thereafter, out of "nowhere." My triggers were really no different than other asthmatics..... perfume, dust, smoke, etc.

What was different was the very small 'dose' of those triggers that began a chain reaction very severe in nature. Each subsequent asthma attack worse than the prior, took longer to recover. In other words, as time went by, it took very little of the trigger to set me off.

As my immune system began to disappear, other triggers evolved and the list is still growing to this day. I need to be in a "bubble"... thought of asking NASA for a spare space suit too

You made several good points about what is going on globally, Bren. However, the conclusion now is that "clean" is dangerous. It tends to set up immune system failure and becomes a domino effect. It is true, the more meds, the smarter the "bugs." That makes those of us with MCS leary of entering the big, bad world.

Wearing charcoal masks help, to some degree, but not enough.

I've become accustomed to the stares, they no longer bother me, tis life.

Also, the more my triggers grow, the longer and longer it takes for me to bounce back. I've resigned myself to the fact that being homebound is the only answer. Then? I have to deal with the factors there...... carpet/carpet glue, paint, plastic (PVC), cooking, wood smoke from nearby fires on occasion.

Oops, I've overstayed my welcome here on "Reply" but I hope I've answered most of your questions. Sorry I am so longwinded!!

Thanks for asking

Nancy

[soulfire78]

I've worked in the medical field for over 5 years now, and I can attest that a great number of health care providers are very arrogant about their knowledge. I've seen so many patients come in with diseases like fibromyalgia that are basically told "too bad... there is no reason for your pain, so you can't have any pain meds." The doctors don't want to admit that they dion'tknow the cause for a problem, and they often won't acknowledge a "controversial" disease, for ignorance or fear of being castigated by their peers.

Most recently, a man came in that had gained over 40 pounds in 1 week. He was suffering from joint pain and lapses in memory, as well as mood swings. After a very short exam, the doctor claimed this man had constipation. Two weeks later, he called to let Doc know that he was suffering from Mercury Poisoning-a buildup of mercury in his body--apparently, he had been eating a can of tuna per day for over 3 years, and the amoount of mercury had finally built up to a critical point in his body. If he hadn't gotten a second opinion, he could have ( and still may) suffered permanent brain damage or death.

I pray that more doctors and researchers will devote time to finding a cure or effective treatment for MCS and other diseases of obscure origin.

Stay strong, Nancy and Kis...you have a lot of folks praying for ya!

[Nancy]

SF78....... Validation always make me smile.....! Thank you!!

I understand how that gentleman must have felt and VERY glad he took the bull by the horns!

Fibromyalgia is also one of the many "diseases" I possess ...... that was diagnosed at Scripps Clinic in San Diego in 1985. Back then, the medical community was just as stubborn in their defiance with diagnosis. I've been fighting this "Dr. Almighty" attitude for close to 20 years. It never gets easier.

Thank you SO much for reading this and YOUR input!

Nancy

[FireFrog]

Nancy, just... wow.

You truly are a fantastic lady, and an inspiration to us all

I have the upmost respect for you and your look on life while diagnosed with such a disease and wish you the best of luck.

Your a true fighter Nancy, my real life Xena warrior princess

--FireFrog

[Nancy]

FireFrog Oh goodness, will my head fit through the door at UM from now on?

Thank you for your kind words, but in reality? I am no different in many ways than anyone else......... other than medically.

Believe me? There are days when I need an 'attitude adjustment' and have to talk to myself to keep pushing on...... But? Overall, I've done my best to accept the "cards dealt" to me, since I can't anti up for a new hand.

The real reason I posted "This 'n That #10" was to make as many people aware of MCS as possible. Guess you could say I've used "UM" and my own website as a soapbox, and if anyone should identify with similar symptoms, help as best I can.

Thank you again........... feeling a tad embarrassed by all this.....

With Respect,

Nancy