My Struggle with MCS

As many of you have noticed, I have a real struggle with scents. The formal term is Multiple Chemical Sensitivity.  I would like to share with you how it happened, my symptoms, what triggers those symptoms and how you can help.

My Life Theme

Genesis

In the summer of 2015, my family and I moved into a rental home where we intended to stay for four years until our youngest son completed high school.  I had been biking 35-50 miles on Saturday afternoons and regularly going on 6 mile walks.  Shortly after moving into this house I started losing my stamina.

I thought maybe I was just getting old and fat and that was causing my loss of stamina.  I hired a nutritionist to help me get more fit.  Nothing we did helped.  To make a very long story short, over the next 18 months I slid into a very deep health hole.  By Christmas of 2016, I could not longer walk.  I could only get around the house by crawling on my hands and knees or worse.

Medical doctors could find nothing wrong.  They insisted I was crazy and wanted to put me on antidepressants so I wouldn’t believe I was sick.

I finally found a functional med doctor who had experience in my problems and actually listened to me. After many, many tests and searching for answers, we finally found hidden toxic mold in our home.  It was in the ceiling of my home-office/man-cave.  The sicker I got, the more time I spent there and the sicker I got.

It turns out the mold that was growing in our ceiling produced the toxin that is used for nerve warfare.  So for 18 months, I was exposed to nerve gas.  This toxin is really good at destroying neurological and immune functions.

Over the course of the next few years with his help, nearly $100,000 in out-of-pocket medical expenses (insurance companies don’t like functional med doctors) and a lot of hard work and tears I am finally able to participate in society once again.

It was actually several trips (about 10) to the Rocky Mountain Region (like this) over a few years that helped us diagnose the mold problem.

Symptoms

Many people get migraines when exposed to scents. My symptoms are a bit different.  Some of them are expressed as neuro-motor blockages.

  • Left leg quits working
  • Verbal skills disappear
  • Massive headache
  • Brain fog
  • Severe pain in left leg

The most noticeable symptom is that my left leg stops working (and sometimes my left arm), making it difficult of impossible to walk.  This is why I keep a cane nearby.  (The positive part is that it happens to my left side.  My right side still works fine, allowing me to drive.)

The other most visible symptom (and maybe the most confusing one) is that I lose the ability to speak.  These symptoms are related to the neuro-motor blockage that happens. If you are trying to speak to me and I am not responding, but have a blank look on my face, it probably means that I am reacting to something and have no ability to respond.

The less visible symptoms are brain fog (losing the ability to think well), a massive headache and severe pain in my left leg.

Triggers

The most common trigger that causes these symptoms is when I inhale volatile organic compounds (VOCs). These are airborne chemicals, typically man-made, and typically have a scent.

Some of the items that give me problems are:

  • Scented deodorants
  • Perfumes
  • Car exhaust (diesel fumes are the worst)
  • Hand sanitizer
  • Dryer sheets (or clothes that have seen dryer sheets)
  • Smoke (cigarette, campfire, etc.)

The good news is that I am getting much, much, much better.  For a year or two, I could not leave the house without wearing an organic compound respirator.  I lived with this on my face or around my neck.

How You Can Help

First, try to be understanding.  If I become symptomatic, I am not going to die.  It is not an emergency. There is no need to call 911.  They won’t have any idea what to do (ask me how I know) and it will cost me a fortune.

I have always said that if you find me passed out, just grab my feet and drag me out into the fresh air. 🙂

The biggest way to help is to help us maintain a fragrance-free workspace.  I know it is really, really hard.  It took us a long time to go fragrance free. Things that could help would be:

  • Use odor-free whiteboard pens
  • Wear unscented deodorant
  • Refrain from wearing perfume/cologne
  • Limit the use of scented dryer sheets

Going Forward

Please know that I am much, much better than even a year ago.  The only way I have survived so far is 1) living in the moment, and 2) practicing gratitude.  Each morning when I wake up I am grateful to be alive.  Everything else is icing on the cake.

There is still a lot of healing that needs to happen. That is why I moved to Colorado. 

In Minnesota I often have a hard time walking across a room and can never walk without a cane.  During the summers I am mostly incapacitated. The dryer climate helps immensely.

Having spent many months over the last couple of years traveling in Wyoming, Colorado, Utah and New Mexico, the dryer climate allows me to walk/hike as much as 5-6 miles per day.  

(My doctor told me that if I stayed in the Midwest, there was a high probability that I would eventually be diagnosed with something similar to MS.)

This post from last summer illustrates how dramatically good air affects me.

Dryer Climate Aids Walking

To the future . . .