This Is MS Multiple Sclerosis Community: Knowledge & Support

Fascinating! I don't think I'd ever heard this term until I saw it in the latest Time magazine this morning:
http://www.time.com/time/health/article ... 69,00.html

A quick Google search brought up tons of "nocebo" articles (it's been around awhile), but my workday looms and I don't have time to scan them all. Wikipedia points out that the term is used in lots of different ways, to explain many phenomena.

But...even more interesting than the nocebo drug effect is its effect on a patient's actual illness when they think it's more severe than it actually is - or when they're TOLD it's more severe than it is. Like this great article from 2002, The Nocebo Effect - Placebo's Evil Twin:
http://www.washingtonpost.com/ac2/wp-dy ... -2002Apr29





It fits right into my own belief that I'm truly fortunate that no one told me until now that I was this "sick" (I still don't consider MS a real "disease"...) or tried to treat me for it. And my own experience that the day of my dx 6 years ago, my main complaint was a tremor in one finger. And now I use a cane (PT showed me that using a cane trained my body that it needed a cane. Now it does.).

And the 2nd quote makes me think of my horrible reactions to both meds and supplements. Hmmm, surely my own healthy psyche couldn't possibly allow my physical symptoms to be influenced by the false assumptions of the nocebo effect! (I blame my slow progression on all the recommended changes I made in my diet and supplements since the dx, of course.)

Since I found MS forums, I've been especially concerned about the enormous fear instilled in MS patients, often used to convince them to take scary drugs (sorry, but to me all drugs are scary). I've never quite understood the way patients are taught that MS is a horrible, horrible thing, more like an evil entity than a disease, that is constantly attacking our bodies and that the only reasonable choice is to attack IT back, using the harshest, most horrible drugs we can find, never mind that they basically attack our entire bodies, and that they're proven to have only small, occasional benefits.

By the time of my dx, I'd already accepted that my body did weird things, and figured out dozens of ways to gently coax it into shape. For 30 + years it's NEVER felt the slightest bit like a disease to me.

I have lots more to say, but I'm off to work soon. Anyone else want to share their thoughts? On anything? Lecture me? Criticize my take on it all? I'm game. (I dare you. )

Later.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

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What a brilliant excuse to blame the patient that the disease is in his/her mind. It's not our drugs worthless, neither we are! It is YOUR mind that makes you worse.

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

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Thanks for your replies and I'd love to delve into this topic some more later, but... This morning I'm dealing with some sort of combo headache (brand new glasses plus fall sinus issues) that appears to be scrambling the brain cells that I delegate for philosophical reasoning and clever composition all to hell.

It's gonna be a looong day at work...and then geology class afterwards. Sorry to ignore the thread, but feel free to keep posting until I make it back.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

I've read about studies that had people dropping out of the placebo arm of the trial because the side effects were too severe.



Read this article and then tell me if you don't have the urge to scratch.
The Itch

NHE

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Like I said, I hate that so much of MS info is designed to instill fear in us, and even the focus on stress almost gives us the blame for being unable to avoid it. And I hate the "look on the bright side" attitude - like we wouldn't even be sick if we could only do that.

But...there's a lot to this idea -- we can work on our perceptions of ourselves and our illness to help improve our physical state, make things better, not worse. I'm absolutely positive that I've accidentally discovered a few tricks of my own over the years that have allowed me to maintain so much of my strength and mobility. If I had been taking drugs for the last 6 years (or more) I would be declared an amazing success for that particular therapy. But I haven't.

And quick comments before I head for another long day of work and tutuoring afterwards.

To Lyon: Holy crap! And thanks for the link. I agree with your take on the capabilities of the human mind.

To NHE: Holy crap! And wow. Awesome article indeed, and I recommend it to everyone. Here's an illuminating quote from it:



I have much more to say later. Of course. More comments about how much more serious we perceive our symptoms to be (or at least I did) once we know they have a true scientific name (L'hermitte's! Restless Leg SYNDROME! Neuropathy! Lesion! Flare! Exacerbation! Autoimmunity! Foot Drop! Raynaud's Syndrome! Spasticity!)

And as for itching, just for fun, I told everyone I had (self-diagnosed) Chronic Idiopathic Urticaria to explain the long red welts that striped my arms and body for a year, because plain old "hives" (that's what CIU actually means) just didn't make it sound important enough for an MS patient to have. And they itched like crazy! And looked really weird! They went away as soon as I gave up junk food...

Thanks guys. Later.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Quoted for truth. Unfortutnately I seems to be a deeply ingrained part of our culture and collective and individual psyches to be aggressive and start wars on everything, maybe because we as human beings are fundamentally afraid. War on diseases, war on people, war on poverty, war on certain drugs, the list goes on.

Well, anxiety depression is proven to make illness worse, and knowing that you're ill brings on anxiety and depression..

Now, for the first few years of my MS I ignored it because I felt so much better and I think that that, in itself, made me feel so much better.. And now that I feel worse, I feel so much worse.

I think that the symptoms of MS are especially changeable with mood and emotion. I suspect that this makes a placebo effect all the greater with our illness.

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Apologies for my terrible username. I never thought I'd use the forum much when I registered..

Hi ElMarino, there's a lot to that point. MS, with its lack of absolute facts (including our dx) about its true nature, may lead our minds into being more easily influenced - for good or ill - than some diseases that can be even more devastating.

And:


Yeah, Thomas, that's an interesting observation. Although the "Fight, fight, fight MS with everything we've got!" viewpoint has always been totally lost on me. Along with "Be aggressive!" Be proactive!" (whatever the hell "proactive" means) I'm lost there.

It's like MS is such a bad thing (which it is), we have to demonize/humanize it into a true enemy we can hate passionately and do battle with. I'm not sure why that approach doesn't resonate with my own psyche. Maybe it's just my own laziness or passiveness. But I also worry that the whole approach instills us with guilt, too. Guilt for letting MS 'get' us, for not doing enough, for being lazy, for not winning the battle. The impossible battle. With an unknown enemy. Without any true weapons. I like myself better than that.

From the beginning of my dx I was constantly put down for not "fighting" the damn thing with meds (even though I'm way past their potential help), when my gut instinct is that the side effects often make them feel more like punishment. We may end up making war on ourselves, and often the tragedy is in the treatment.

But I truly believe that there is plenty we can all do to get past the disheartening rhetoric that comes to us along with the MS Facts as they're officially presented. When I pay as much attention to the good things that happen in my body as to watching it deteriorate, I can spot those things that helped and continue to do them. I just trudge along, accepting, adjusting.

I think my opinions place me in a minority of one, however. And the fact that each and every one of us is in a different situation, a different stage, maybe even a different disease or combination of diseases makes it imperative that we investigate and deal with our MS in our own way.

Another itch story: I haven't always been medphobic. In fact, I came of age smack dab in the midst of the Woodstock Era. I tried all the recreational drugs I was offered at the time - maybe MS was partly to blame for my inability to get good at using them.

So anyway, I was lying in bed incredibly stoned one night when I noticed an enormous itch down my leg, too far to scratch without effort. So, I decided I would use the heightened powers of my mind to just move the itch up to my arm where it would be easier to scratch. It worked! I've been telling that story for years.

I wish us all good thoughts, good feelings, good perceptions, and healthier days. My empathy is with you all. And I do have hope that we'll all find our way.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)