I do not take MS drugs because I think they have limited value. Also, I function just fine without them so why should society pay for the cost of these drugs? More important, why would I want to risk taking them? I know others with MS who feel as I do, and we all walk without problems and have no visible disabilities. In contrast, those I know who do rely on drugs and steroids do not fare so well.
Those of us who do not do the drugs do follow ultra-healthy life styles. This is probably the reason we have so few problems.
It is interesting to me that experts now estimate that 40% to 60% of health care costs arise from poor life style choices including unhealthy diet, lack of exercise, smoking, and alcohol and drug abuse. I think these life style choices are having a major impact on the costs associated with MS also.
Hi Rebecca,
It's good to see you here and thanks for the comment. I think that you would enjoy the entire series of posts beginning with Quality of Life: Is It Health-Related? More than once, I refer to MSers who choose NOT to use disease-modifying treatments and who do well with their choice.
Important is the emphasis on interventions such as physical therapy and comprehensive rehabilitation which reinforces the necessity to maximize physical function and cardiovascular fitness. I'm currently under the guidance of a PT who is not only helping me with improving balance, but also teaching me how to work my body in an optimum way without triggering debilitating fatigue. I have been able to eliminate symptomatic medication because of this.
Also important is the discussion of addressing the psychosocial needs of patients, an aspect of living (with or without disease) which no medication can satisfy. The abilities to develop coping skills early on and to learn to "benefit find" are essential in preserving quality of life.
A major point of the final post (in context with the others) is to support the use of effective interventions, such as physical therapy (exercise) and psychosocial support (education, skills, and support), to maintain and improve the quality of life for MS patients. The disease-modifying treatments are just one tool which attempt to protect the same quality of life.
I purposely did not discuss a nutritional approach in these posts because it was beyond the scope of this survey and should be given much more thorough coverage. It would make sense following the same logic (economically) above that access to nutritionalist who are specialized in autoimmune diseases should be supported by the payer (ie. insurance company, government agency, or patient himself).
Drugs should not be the only intervention which is supported by the payer, especially when complementary approaches are highly cost-effective and may eliminate a perceived 'need' for additional medication. I agree that regular physical activity will help to protect against disability in most cases and this should be supported for patients.
Please read the entire series.
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Lisa the inbformation that you have gathered is so very important, and so good. It is a shame that the people who need to hear and act on it will not do so unless it effects someone close to them or someone that they know. If you ever notice unless someone famous comes down with our sickness it is not put in the forefront of cures to be found. I heard on the new the other day that they had almost found the cure for the common cold, and peanut allergies. Now both of these items are very important. The Peanut allergy can take a persons life. I realize that it is a slow process and it takes time. Cures are hard to find an costly. In the meantime take care of those who need taking care of, provide for those who need provisions. Just do the right thing.
Thank you, Sherry!
To be completely honest, I have such mixed feelings about the 'celebrity with illness' approach. Too often it seems to be extra PR for the celebrity and less about advocating for awareness, funds, and a cure for the disease. Sure there is research going on right now, but there are many people who are living with this disease who need SUPPORT and SERVICES right now.
A very dear friend of mine, Herrad, lives in Amsterdam and was diagnosed with Primary Progressive MS in the summer of 2006. She went downhill very quickly and was given a wheelchair which didn't fit her properly. It jostled her around and she would end up slumping in it.
She developed a pressure sore last summer which got so bad that she was ordered to bedrest for 6 weeks which became 3 months and now 7 months. Her nurse just recently told her just how bad the wound had been at a home visit last month. (Herrad's husband takes care of her fulltime at home.) Apparently it measured 9 centimeters deep and had almost exposed the bone.
She's only got one more centimeter to go and might just be able to get back into a chair by the end of April. We're all praying for that and would love to see her be able to see the spring blooms and feel the sunshine on her face. So now, they are talking about getting her a chair which will have a custom-molded back and (I think) a pressure-alternating seat cushion which fits the chair and fits her.
I wish that the medical system had just provided that to begin with and Herrad would not have lost almost 9 months of her (limited) life in bed. She is blogging with great regularity now and shares the deep emotions which she is feeling. Her husband, Richie, is also blogging his experience as well. Maybe you would like to visit their blogs sometime. Everybody whom Herrad touches immediately feels just truly how special she really is.
Lisa, It burdens my heart to hear about situations such as these that are going on in our world today. My point about the peanut allergy, and the common cold. They are very important do not get me wrong, but you have people who are suffering from chronic illnesses. Illnesses that will cause a person to use life long disability. In other words be on the Social System for a life time. I cannot speak for anyone else but myself. But it has never been my life's dream to be on disability, I have always wanted to worked until my employer forbid me to come back into the front door. I am sure that most people feel the same way. Dealng with the system is like trying to take needle nose plyers and pull out your own wisdom tooth, believe me, I know, I have been in enough pain and I tried it! Let your friend know that she is in my prayers, and things are going to work out. The people that are sitting behind those desk and making the laws and rules, fail to realize one important thing; the song forever young is a lie, there is no fountain of youth, sickness or diease does not care who it picks, and you are up and running today, but tomorrow it is a cane or a wheelchair.