This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi
I was thrilled to go to a recent MS Therapy day where practitioners of complementary medicine gave people with MS a free massage.
It was organised bya branch of the MS society.
I got a foot massage and a head massage and was on cloud nine!

One odd thing though. The first woman told me "if you fight your MS you are fighting part of yourself. You have to learn to love your MS". I was very grateful to her for the massage but I thought "what rubbish".

That wasn't so bad but then I saw the guy doing the head massage. He asked me all about diet, exercise, my MS history. Perhaps I should have stopped him there...but it's awkward when someone's giving you something for free. He went on to say that I could get my hearing back (it's been totally gone for 10 years in one ear due to MS) if I changed my attitude and I was "so close to being completely MS free". When he weasled out of me that my relapses were seasonal (Aug/Sep) he said "something emotional is connected with that time" and he said if I could work on that I'd be free of the MS.

Now I don't give a rats behind about what they were saying, it didn't upset me, but I do wonder if I were at a vulnerable point, or was having a hard time with my MS at the moment, that kind of talk could give dangerously false hope.

Would other MS'ers be annoyed/bothered by this kind of discussions or am I being too serious about it?
I am thinking I will let the MS branch know what had been said...it seems unscrupulous to me...anyone else?

Practitioners of complimentary medicine use a different part of their brain than most of us. I guess you got a lesson in it and can take from it what you want (or leave the advice behind).

I would not complain about them, but would remember the enjoyment I got from the day sans the advice. They were trying to make your life better for one day, can't fault them for that.

gwa

WW,

I'd have been offended. That definitely seems like "its all in your mind" thinking to me. I wonder how many people have that concept of MS. I bet lots. Kind of makes me mad.
I won't ever love my MS. I wouldn't suggest that my dad love his cancer. Or my daughter-in-law, her type 1 diabetes. My guess is that they wouldn't have had the same advice for them. Why is that?

Terry

Hey Terry...
Wondered the same thing. I think it's because some people have a hard time dealing with a disease they cannot define or cure. MS is still a mystery to doctors and patients. At one time, epileptics were seen as possessed by the devil, menstrual pain was perceived as "hysteria" and in the mind of women. Until doctors can explain MS, it will be open to faulty perceptions, crazy treatments, and patients might be blamed for their sickness. It's just another one of the unfair aspects of this lousy disease.
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

is it just me or does this sound all like a sales pitch? I would guess they were either told by the organiser or thought of this as a chance to offer something "free", as an opportunity to gain new clients.

If you take away their "free" offering, and took what they said on its own, I am sure you wouldn't think twice about it. Advertisers often offer "free" things for a chance to hit you with their message (think of "free to air" tv with ads between each segment). Because of the almost underhanded wrapping of their message, it would bother me too.

For some reason my pc won't let me copy and paste so I'lll have to refer to your OP's.

Terry I thought about that too. I was thinking I wonder if they'd tell my husband his throid problems are in his mind? Or my mother's gall bladder cyst is "just so close" to being got rid of if she changed her thinking? On mature, overnight reflection I realise I am a bit cheesed off with it. If I could think my hearing back it would be back, for years I believed it would come back. I used to even "train" my ear for hours each day by putting the headphones into my deaf ear, I went to a homeopath, chiropractors, the best private ear consultant in the country, acupunture, reflexology etc. Love my MS - WHAT RUBBISH!

Cheer I think you're spot on - it's because you can't see MS like you can a broken leg, and because the cause is unknown. And I suspect because it is experienced far more by women. Must be in the mind.

It's a bit like the recent Copaxone nurse telling me "you have to believe in it otherwise it won't work" and I was very close to asking her what double-blinded placebo-controlled clinical trials were for then? But I didn't because she was a kind-hearted person, but inside I was wondering

Cure - you are ABSOLUTELY right. It was a sales pitch to promote their healing centre. It is the way they marketed the day - and to ask such personal medical questions whilst putting on a learned face and pronouncing on my MS - it's that that left me feeling decidedly odd about the whole thing.

I think I willl probably thank the MS society profusely for teh day - because it was good. But I think I will let them know what was said because it was a bit unscrupulous I think....

This would be the best way to handle the situation. The MS Society needs to know what went on and they can make a determination about continuing with the program.

I have just ignored so many "helpful" comments through the years that such jibberish no longer bothers me. I once had a woman on an airplane try to "cure" me with her suggestions and it was good my husband was between us so she did not have a direct ear of mine to blather in.

gwa

Gawd yes Gwa at least your husband was in between.

I asked my good friend with epilepsy today about it and said "Colin, if someone told you you were "so close" to totally getting rid of your epilepsy, and if you worked with him and changed your thinking, habits etc, you could be free of it what would you say"?

Colin said he would have punched him.
I was more amused and irritated in equal measure that someone could be so stupid about MS but punching, no!

just got to hold on to our common sense..

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Had ms for over 19 years now.

So many people have a hard time relating to something they haven't experienced or aren't completely schooled in. I once had a guy that was trying to get me sell Amway. He went on to tell me that their multi-vitamin was making some people MS free. I was pissed at first and told him to get out of my house. Then I simply thought that maybe some of his clients told him that if they were coming out of a relapse when they started taking the "nutrilite" vitamins. I think if Amway multi vitamins kept people symptom free, there wouldn't be enough supply of Amway vitamins for a while.

I just go ahead and let people have their ignorance now. But if they push the issue, I usually let them know that they need lots and lots of education about MS and to get back to me when they get it.....but usually not that politically correct. When it gets to that point, I usually don't have too much patience, and I probably would have complained, but that's just me.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Yes! Feel free to complain away. I would. The MS society either knows that this group is using this as a marketing opportunity to deliver their special message or they are being used to take advantage of people who place their trust in the MS society. In either case it would be good to complain as their marketing message differs so much from the MS society's usual position on MS research that they should be made aware of what this group is doing. In contrast, if the MS society already has knowledge of this group's activities, then that should be known as well and, if so, a complaint should be filed with the MS society. In any case, it seems kind of sleazy to me for this group to "sell" their message when they have people in a highly suggestible and vulnerable state.

NHE

I told my assistant about this today. She said that if they were giving "healing massages" they would probably have the same message for anyone no matter their illness...cancer...diabetes...ms...whatever.
It seems to me that if mind over matter truly worked, there would be some who never got sick and never died.
My dad has incurable cancer since 2000 and I believe that his attitude has helped him. If a positive attitude could cure, though, he would be cured. He is not.
Seems to me that "mind" can make our days better and can help us last longer, but ultimately, we live in human bodies that break down.
I think the massage folks would have done everyone a bigger favor by being quiet and letting the recipients just enjoy. The day would have probably been much more "healing".
Terry

I would have been offended - I recently had somebody trying to talk me into Reiki to 'heal' my MS. I have very strong opinions about alternative healing - I won't get into them! As for loving my MS - no chance! And people at church tell me the opposite - don't accept it. Reject it! I'm not sure - I'm still just dealing!


I'm not sure I would bother to complain but then I don't like conflict. I think maybe accept that they were good intentioned people who just don't know when their opinion is unwelcome!