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MS = Multiple Sclerosis + Mutual Support

MS = Multiple Sclerosis + Mutual Support

You have multiple sclerosis and I have multiple sclerosis, but I have not walked in your shoes. People with MS do not think or act more alike than any other segment of the population. We are a diverse and complex group of individuals and despite all we have in common, our experiences with MS are uniquely our own.

One thing we do all have in common is the need to make decisions. How and why we arrive at these decisions is complicated and personal. Our particular symptoms, age, other medical conditions, family, medical advice, financial status — and yes, our health care coverage — are just a few of the issues we each have to take into consideration.

Some people with MS reject medical intervention, opting instead for lifestyle changes and 100 percent natural methods of dealing with the condition. There are many diets aimed at people with MS, most notably the Swank Diet. Controversy about the benefits and risks of these diets is ongoing, but one thing is certain — lifestyle choices like diet, rest, and exercise can play a large role in how we cope with MS.

Some of us choose a healthy lifestyle while taking one of the disease-modifying drugs for MS in an effort to stave off permanent disability. Some people also fight individual symptoms with prescription medications. Whether or not you do so is an intensely personal decision.

Others ways of tackling MS include dietary changes, exercise, acupuncture, stress reduction techniques, relaxation methods, yoga, and various holistic methods. Used in conjunction with conventional modern medicine, these are called complementary; when used in place of conventional medicine, they are called alternative, though one might question the use of the word alternative when it comes to practices that pre-date modern medicine.

As with conventional medicine, when considering complementary or alternative medicines, the burden falls on us to research and familiarize ourselves with the risks and potential benefits. The decision is ours, but it is vitally important that we share these decisions when visiting with a physician.

I’ve been writing about MS for several years now, and am still taken aback when my fellow MSers pass judgment about the opinions and choices of others, creating a divisive atmosphere rather than a supportive one. Since there is no clear-cut cause of MS, no obvious path to easing symptoms that applies to everyone, no bonafide cure all, it seems rather presumptuous and mean-spirited to harshly criticize other people with MS for doing what they believe to be in their own best interest.

That’s not to say that we shouldn’t engage in animated discussion about MS treatments — after all, research has taken some exciting turns with startling breakthroughs in recent years giving us plenty to consider and debate. It is well known that the symptoms of MS vary greatly from person to person, making prognosis near impossible, and it stands to reason that treatments will also have widely differing results.

I like to caution folks about the many “cures” and the scams that land in your email inbox, the purpose being to separate desperate people from their money. I advise extreme caution and serious research before moving forward with any new treatment. That doesn’t mean I don’t respect your right to decide for yourself. Hopefully, you give others the same respect. Mutual support among us takes the edge off.

For more about becoming a pro-active patient see: Health Care Self-Advocacy: Be the Squeaky Wheel, and for a world of MS information and support online: MS Info on the Web

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.

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Ann Pietrangelo

Ann Pietrangelo is the author of No More Secs! Living, Laughing & Loving Despite Multiple Sclerosis and Catch That Look: Living, Laughing & Loving Despite Triple-Negative Breast Cancer. She is a freelance writer and member of the American Society of Journalists and Authors. Follow on Twitter @AnnPietrangelo

36 comments

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2:31PM PST on Feb 26, 2010

thanks

12:34AM PST on Feb 19, 2010

Thank you.

6:41PM PST on Jan 30, 2010

I have written some essays about my experience coming to terms with my MS. You can read them here: wearygrace.com. I'd love your feedback.

4:26PM PST on Jan 30, 2010

Thanks.

9:31AM PST on Jan 26, 2010

Thanks for this...for my friend Ms Lisa, she is alone and her family treats her as if all she has is a cold...i'ts very sad to watch...but she has faith....and now she can also have Care2.com...

7:14AM PST on Jan 19, 2010

Jesus himself took my deseases and infirmities. I will live: I will not die and I will tell the works of the Heavenly Father. God wants me to be in good health. The healing is God's will for it is part of his redemption plan. Health and healing are mine. Desease does not come from God. Desease and infirmity belong to the devil. So I don't accept nor desease or infirmity in my body. (from the book "Health Food" by Kenneth E. Hagin). Oh God if it's your will, please also lead this child to the Healing Room Ministry as you did for me. This is such a comfort on my healing path from MS desease as we all TRUST in YOUR LOVING POWER ! We have the power - FAITH sets off the POWER ! Thank you Heavenly Father the almighty - Glory to the Lord - in Jesus name I pray - Thank you Father - Thank you Jesus - Thank you Holy Spirit - AMEN and AMEN and AMEN

3:57AM PST on Jan 15, 2010

noted

3:30PM PST on Jan 14, 2010

My wife Maria has been diagnosed for 12 years with MS. Her courage and determination has inspired me to record a CD of Piano Music, "Swept Away" with 25% of Sales donated to Multiple Sclerosis. To see more, check out mywebsite www.mariocommisso.com

2:06AM PST on Jan 14, 2010

noted

2:04AM PST on Jan 14, 2010

noted

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Disclaimer: The views expressed above are solely those of the author and may not reflect those of
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