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Stu's Views:
First, let it be said that what I write here on this blog posting is just my opinion.
For many it will be seen and understood as either a positive or a negative and as I explained to someone yesterday who is fed-up with many things being told to the ms community, there are positives and negatives to everything in life.
That for every positive, there is a negative,,,
Almost everyday, I am asked my opinion on drugs (medications) in circulation or of those being studied. And so, here is what I see/think with medications soon on the horizon and for some already on the market.
Whether it be Tysabri, Cladribine, Fingolimod (FTY-720) or anything else in use, or not yet being used for MS.
Like Tysabri, during clinical trials there was no problem with PML and like many of these other meds in final studies or getting ready for approval, there also are not many problems to keep it from being launched.
It's not until thousands begin using the medications that problems are then discovered, that were not known to happen during the trials... Are the negatives being held back so that the drug is launched? This I can not answer.
There are risks and potential side effects to everything you use or do, in life. It's what risks you want to take to enjoy the life you have.... Some sky dive or go bungee jumping. These are things I would not choose to do and instead I find joy and happiness in other things, like providing "you" with information" and doing other forms of entertainment. Yet getting back to those that Sky dive, many of you will say hey that is way too risky for me to do..
And then there are those that know that taking certain medications may be more risky than others, but have found that without taking that particular medication, that their level of "QOL" (quality of life) did not measure-up, prior to that medication.
So, in essence, taking a specific path or using a certain medication may be the same for those, that Skydiving or bungee jumping, may be for others...... Get my drift?
I hope to see your comments. Here at this blog posting or on my facebook page, where this article will feed-to, as soon as it gets published.....
Have a great day everybody...
Regards,
Stuart Schlossman
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10 comments:
Great thoughts!
What in life do we don't know what will happen. If you look at only the negatives, how is that going to help.
Consider just being diagnosed with MS puts us into a very small group. Who knows what new medication will allow us to do things we thought we never could do agin. Take a chance and be positive.
Bob Mannella
Beaver Falls Pa
Great perspective!I appreciate everything you do to help inform and support us MSers. Thank you for sharing your thoughts and really your life with us!
Jeanne
Roswell, GA
Thank you Stuart!
Excellent post, Stuart! I am grateful that you collect all this information for us and offer some food for thought as well. It empowers us in our fight against MS.
Maria
Staunton, VA
The problem is that we are continuously told of the potential risks involved with taking these medications. It is like medications being hyped on TV. The list of potential side effects would scare many people from trying most medications. If we were reminded of the risk of traveling by car everytime we got ready to get in a car it would discourage some from driving.
Everything in life has risks. We just need to weigh the benefits against the potential risk.
I plan to keep driving and taking medications that help my QOL.
Jim
I think it needs to be understood that your site provides information which often leads to sharing of personal experiences.
It is the responsibility of any person interested in something, especially medication, to be held accountable of what information they gather and how it is used.
Interpretations and experiences will often differ as no two people are alike.
Your hard work is appreciated.
Thanks for what you had to say about the meds and their side effects. If aspirin weren't on the market yet and waiting for approval now, it wouldn't have passed. I think some people need to keep this in mind as the rail on about these other medications.
I've been diagnosed with MS for about 12 years now, after 14 years of coming and going random symptoms. The mainstream drugs aren't an option for me because of my hyper-sensitivity to them or flat out allergic reactions. I still read about what's in trial or new things on the market.
I take the RA drug, Methotrexate, off label and it helps, but it's not doing anything about slowing or stopping the progression of MS.
True, true and yes thank you too...
Of course my site ( this blog) is often of personal experiences and of what I hear from others.
However, it is usually only for information that I obtain, disseminate and then provide to others for they to absorb or discard.
Have a great day...
People are always more than happy to give their own opinion on your situation--whether that be how you should be parenting differently, what you should/shouldn't be eating, what motivational book to read & absolutely what risks we should not be taking. But you are so right---anything that makes life worth living involves risks. Relationships, having a child, moving, even eating. I have to remind myself that although that individual(s) may mean very well & be concerned about my true welfare, they are not living in my shoes so they are not the ones that I should be totally listening to. God has given each of us an intuition ("gut feeling") that will guide us to do what is most meaningful & provide a QOL, which may come after research & investigation. You shared a great perspective in how our belief systems are inconsistent yet also judgmental. Well done!
I have just started reading your blog, Stuart, and find it helpful. When I first friended you in Facebook it was because I had seen your blog and though, "Well, if nothing else, I can hear another opinion on our MS situation." It has turned out to be so much more. I have learned more about other medications and possible options for me.
Thank you and keep up the good work.
Lisa
McKinney, TX
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