The Back Story



Diagnosed with MS in January, 1996, I've been treated with  Avonex, Rebif, corticosteroids and other toxic, immune-weakening drugs. I soon realized that the unprovable reward of delayed disability wasn't worth the daily loss of quality of life from some of these drugs. While on Avonex for a year, I suffered with constant fever, chills, body aches and fatigue.  My children were very young and I was so unwell from the drug that I missed out on what should have been a magical time of life.  Looking back, it's hard to believe I put up with it, and I realize I chose to suffer because I was terrified.  I trusted bullying physicians instead of my own intuition and my own body.

When I was diagnosed, my doctor told me I was very lucky to be receiving the diagnosis at that point in history.  He said it was a very exciting time for research and development, and that I could count on a cure for MS within 5 years or so.  Three years later, after weaning my second baby, I had my horrible year of Avonex and got sicker and sicker.  Through the years, a cure never came and R&D produced a few new things but our own immune systems were still considered the culprits so most innovations were not so different from what had come before.

Crippling the immune system so it can't harm the central nervous system is the wrong approach, in my opinion. All crippling the immune system did for me was cause me to pick up any germ that might be floating around. Once sick, the MS really kicked into gear, so the remedy actually worsened the course of disease for me.  I've noticed that intense stress and illness very palpably ignite my disease. I feel our immune systems shouldn't be dismantled, at least during the remitting phase of disease. They should be supported in a way that encourages normal function instead of malfunction. Treatment through nutrition, mitochondrial support and the elimination of foods or environmental toxins which trigger allergies or sensitivities makes the most sense.  I have been on Copaxone for the last 16 years.  This prescription daily subcutaneous injection does not affect the immune system.  It serves as a decoy.  If my immune system malfunctions during times of stress, infection or illness, the drug draws the attack to itself, saving my nerves and brain.  Until recently, I've not been able to palpably detect whether or not it actually works, but I missed a day and was worse for it so I'll continue using it.  The result of accepting a mysterious molecule into my carefully curated system is unknown, and there's a bit of scarring on my belly, but with no other side effects, it's worth continuing at this point.

MS is so different from person to person, and treatment choice is personal.  I've had many neurologists in different cities -- some who didn't know much about MS, some who were bullies, and some who were kind.  I've found that the ones who knew the most about research and development were the least likely to listen to anything I had to say.  Currently I work with a Neurologist who is good enough to let me chart my own course with her supervision, and a Functional Medicine MD who carefully tracks the clinical results of what I'm doing.  I'm constantly learning more about MS and about what I can do to keep myself healthy, beyond modern medicine's limitations.  Since 2010 I've been applying extreme self-care including specific dietary approaches.  I'm now at a stage of fine-tuning.  I'll share here what I'm learning.

Legal Disclaimer:  I'm not a physician and my results may differ from yours.  I continue to consult with my physicians and encourage you to do the same.

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