Tuesday, January 22, 2013

Everything Is Not Coming up Roses

Coming Up Roses
(Photo credit: Jennuine Captures)
A recent article at everydayhealth.com had this headline:
10 Facts You Should Know About Multiple Sclerosis
Multiple sclerosis is now a treatable disease. Get the facts about MS, and find out why MS experts are upbeat about this common neurological disorder.
This just makes me mad!

For the average healthy person reading this article, as well as many patients who have the relapsing remitting type of MS, this is welcomed good news. But for those of us who are having our asses kicked by MS, this type of article does us a disservice.

It’s acceptable, and perhaps even admirable, to acknowledge the gains that have been made in MS treatment. 20 years ago there were no treatments. 10 years ago there were only three treatments. Today there are many choices of disease modifying drugs, and we are finally seeing oral treatments that do not require a shot or an IV. Yes, there has been some progress.

However, there are several factors supporting my position that our advancements in the field of MS treatment are woefully lacking. Although these disease modifying treatments tend to reduce the number of relapses, there is scant evidence that they provide reduced disability in the long term. Many patients see no benefit, or only temporary benefit, from these treatments. They are expensive – $50,000 per year is typical. They carry with them considerable and potentially serious side effects.

And here is my primary point. These drugs only work for, and are only approved for, the most common type of MS – relapsing remitting MS. They don’t work for secondary progressive or primary progressive patients, and we’re the ones who experience the most severe effects from MS.

MS drugs aren’t unique. This “treat the disease with highly profitable drugs, but don’t cure it” phenomenon occurs with all sorts of diseases. For a rather hard-hitting essay on our dysfunctional medical-industrial complex, read this Wheelchair Kamikaze blog post.

I’m not trying to rain on anyone’s parade. I don’t mind these types of articles, if only they took the time to acknowledge that so many of us still suffer terribly from MS, and we see little or no hope for improvements in our lifetimes. I am acquainted with many MS patients who struggle to get through each day. I even know several MS patients who expect to die from complications of the disease in the next few years. The picture is not rosy, as much as we would like it to be.

Note to journalists and doctors moonlighting as journalists: stop saying things like “this is a great time to have MS” or “multiple sclerosis is now a treatable disease” without qualifying your statements by acknowledging the significant number of us who are not benefiting at all from current, approved treatments. You are being thoughtless and cruel when you make these statements, although in most cases I don’t think you even realize it.

Before I get off my soapbox, I’ll point out that later in the above referenced article the physician-author makes several atrocious statements. First, she says that 85% of patients have the relapsing remitting form of MS. This is a basic mis-statement of an elementary statistical fact. Approximately 85% of patients are initially diagnosed with relapsing remitting MS, but more than half of those patients will eventually develop secondary progressive MS (which is not treatable). She also refers to progressive MS as “rare,” essentially dismissing us as the irrelevant fringe of the MS world. We don’t like that characterization, and it is not accurate.

So whenever you encounter the “good news” about MS, be skeptical. Remember those who have been left behind.

Note: Yes, I recently announced that I seem to be benefiting from an experimental treatment called intrathecal methotrexate. However, this drug is not FDA approved for multiple sclerosis. It has not been through double-blind, placebo-controlled studies to verify its efficacy. It’s apparently working for me right now, and for that I am extremely grateful. However, I live in fear every day that it’ll just stop working, because we simply don’t know enough about how this treatment affects multiple sclerosis.
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  1. thank you for adding your voice to the slowly growing noise about this issue. the only way this is going to change is thru patient advocacy - we have to make enough noise to get noticed. i have heard this about treatments for other diseases, like diabetes, that there are effective treatments that are not being studied/offered because they are not profitable for the drug/insurance industry.

  2. Yes, let's ALL join Mitch and MAKE SOME NOISE! I am also being left behind in a cloud of dust!

    There are NO disease-modifying drugs for people with Primary Progressive MS, the ugly category that I fall into. And while they're at it, maybe they can spend a few bucks and FIND THE **CAUSE** AS WELL, SO OTHERS WON'T FALL BEHIND ME!

  3. Howdy Mitch!

    Agree with this post.

    A cure would mean no more CNS losses for anyone with MS. A patient with any form of MS, PPMS/SPMS/RRMS, has no options to repair the damage already done. Even if all future damage is stopped immediately through a new drug there still remains the losses already accrued that can not be regained.

    This is a bummer.

  4. Also - the picture for today is neat. Do you know which artist created it?

  5. Very good summary on the ridiculous lack of understanding the supposed MS experts exhibit. We will just have to keep slugging away with experimental treatments and figure it out ourselves. So glad to hear the methotrexate is working for you! I'm doing well with stem cells at 9 months.

  6. zoomdoggies,

    Damn right!


    yes, the system is broken, and we can't be quiet about it.


    Yes, it's doubly frustrating. There are no treatments for us, and this fact seems to be routinely ignored.


    You are so right. In an ideal world we would identify the root cause of the disease, come up with a way to prevent it or stop it if it is already started, and then we would come up with a way to reverse the damage. There's a lot left to do, and articles like the one I cited are not helpful.

    Regarding this very cool picture, I found it by googling "everything's coming up roses" and clicking on the images tab. I don't know where it originated from. I "borrowed it" from another blog that didn't give attribution either. If anyone can identify the source of this graphic, I would love to credit them.


    It's been a while. Great to hear from you. thanks for sharing this post on your Facebook page. I'm glad to hear that the stem cells are continuing to work for you!