Wednesday, September 22, 2010
Pills, needles & surgery...oh my!
It is funny how a particular topic sticks with you. I have been thinking about this topic for about a month now and must blog to help ease my mind. LOL
Important Note - The information listed below is that of my own opinion and is not meant to be medical advice. I have no medical background and am just a person living with MS that has developed a passion for sharing information (and my opinion) with others. Always consult your doctor for medical advice.
There is a bunch of information swarming the internet about various different treatments for MS and a bunch of opinions about which is better. I have mentioned before and will mention again...MS is DIFFERENT for everyone. In the two years I have been officially diagnosed, I haven't met one person that is on the same exact list of meds.
There are different kinds and different purposes for every single one. There are meds called disease modifying therapies, meds to help manage symptoms, complementary & alternative meds & practices and even surgery. It can be rather confusing....but that is normal for MS! LOL I will try to break it down into sections for easy reading:
Disease Modifying Therapies ~
The disease modifying therapies are Copaxone, Rebif, Betaseron, Novantrone, Avonex & Tysabri. The purpose of a disease modifying therapy is to slow the progression of an individual's MS. They are all administered by injection or IV infusion and each have their own set of side effects.
I found this link that describes each of the disease modifying therapies~ http://ms.about.com/od/treatments/a/ms_treatment.htm
It is common that a person newly diagnosed with MS is told to start a disease modifying therapy ASAP to slow the progression of their disease as quickly and as early as possible.
MS Management ~
Each person with MS has different symptoms and there is usually a combination of medicines and therapies that an MSer is on. These can be anything from pills to steroids to physical therapy...it all just depends on the particular individual's needs.
The National MS Society has pages on their website dedicated to symptoms & lists common management treatments, here is the link: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/index.aspx
Complimentary & Alternative Medicine (CAM) ~
CAM is for MSers that are looking for a more natural way to go about managing their MS. CAM includes anything from lifestyle changes to vitamins to acupuncture. There tends to be not enough information out there about these treatments and so caution & consulting your doctor is always recommended. The National MS Society has put together some information that is helpful, here is the link: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/complementary--alternative-medicine/index.aspx
There is also a book specifically about CAM that is available, called "Complimentary and Alternative Medicine and Multiple Sclerosis by Dr. Allen C. Bowling, MD, PhD...here is the link: http://www.demosmedpub.com/prod.aspx?prod_id=9781932603545
Newest Treatments ~
There are two things that are BIG topics in the MS world...oral medications and CCSVI.
The oral medications are still in clinical trials and there are reports of serious side effects, but I have read that there is potential that they will be approved by the FDA in the next year and make a slow penetration into the market. Here is an article on the oral medication topic: http://www.minyanville.com/businessmarkets/articles/ms-multiple-sclerosis-ms-treatments-gilenia/9/20/2010/id/30177
CCSVI is actually a surgery to open veins that aren't allowing proper blood flow from the brain & spine to the heart. CCSVI is still very controversial, especially with relation to MS and the effectiveness. However, I've read several success stories and some are even calling it a "liberation treatment". Here is a link with more detailed information about CCSVI: http://csvi-ms.net/en
Now that I've listed all of the information about many of the current treatments for MS (and I know there are probably more that I didn't even cover)....I'll explain why the topic of this blog post is "Pills, needles & surgery...oh my!" I think that there is a common frustration among MSers because there isn't a clear understanding of the long-term affects of the medications that we are being told to take. The common age for diagnosis is between 20 to 40 years old and since MS is a chronic illness...that means we are going to be living with it for another 40 to 60 years or so. I think this generates a desperation to find a cure...or at the very least a better way to manage the progression & symptoms! When I was first diagnosed in 2008, I was ready to start disease modifying therapy and take whatever pills necessary to maintain my life. However, the more I accepted my MS and the longer I continued to take my medications...the more I realized how frustrating it is to be on pills & injections the rest of my life. I want a cure....period. Sure, sounds simple enough, right?! HA! I doubt that we will ever see a cure for MS (or any other chronic illness or cancer for that matter). There is something seriously messed up about the government because it is not an easy process to get the necessary research funded. Plus, think about it...if cures were found...how much money would the health care industry and pharmaceutical companies lose?! Billions and billions of dollars are spent every year by those that are living with chronic illnesses and trying to save themselves from cancers. Hmmm...I know...sounds like a conspiracy theory...but it does make one wonder....
Phew...I'm glad to have gotten this topic out of my head for now.
Thanks for reading! Hugs to all!!! :)