Common MS Myths!

[jensequitur]

Hey, folks...

I think we need a Health Page describing the myths that go along with Multiple Sclerosis.  For example, this has to be the seventh time I've heard about aspartame.  I've also heard that coffee is bad for you, which is another myth.  I've also heard that MS is a 'viral' disease, and that MS is something you can cure through diet.

So what myths have you heard?  Come on, spill the beans.  I'll put them all together on a Health Page when I've got a pile of stories.

[Tahiri_Veila]

How about instead of the your to old, Your too young.  I have not been diagnosed but I was told by my neurologist that I am too yound and the disease if I have it not far enough along to diagnose 100% so I cannot recieve treatment until He can prove it 100%.

[doublevision1]

Rena, that is kind of along the same lines as the myth that MS goes into remission.  SYMPTOMS may remit in RRMS, but the disease itself does not.

Many people mistakenly believe when we talk about our remissions, it means the disease has temporarily gone away, or at least is doing no damage because there are no active symptoms.

MS remissions are not the same thing as remissions of diseases like cancer.

db

[Rena705]

Ok...I have to add it in...You have MS but, I, the MS Specialist have deemed it "IN-ACTIVE" so you do not require the disease modifying drugs and because it is IN-ACTIVE it is not the cause for the pain in your legs, your double vision, your cognitive difficulties, your nerve pain or anything else that goes on wrong in your body.

I think this could go under either "lies my neurologist told me" or "MS Myths"...you can make the call on this one ok?

Rena  

[alastria]

Neuro Myths...

I ended up with this neuro b/c he did my NCV/EMG and then noted the abnormalities in my clinical neurological examination.  He was a jerk but I felt like he was at least looking for the cause of things.  So he ordered a new brain MRI (18 months after my original) - the neuroradiologist's conclusion was that my results were highly suggestive of MS.  The neuro said he thought it was ADEM (really? I'm 36, female, white, live in New England, have a bunch of positive examination findings, etc) and said "you don't want to get a puncture or take meds forever.  Let's just wait and see if you go blind in one eye or something."  

After reading much about ADEM, it's so rare and I so didn't fit.  Why do some of them push this when early diagnosis of MS is so important?  I spoke to the radiologist myself and went over my films with him and got myself in with an MS specialist.  (My whole story is in my journal.)

[RAY911]

this was told to me at work,, after I told a co-worker I was being "worked-up" for ms,, I told her I had Unspecified Lesions and that was her comment...

then it was,,,, "So see Ray you DONT have MS"

the whole while i'm thinking,,, "why Ray do you pay a MS specialist?  when you could just talk with your co-worker?????  she HAS all the answeres"!!!!!!!!!!

lololololololol

Ray

[RAY911]

First of all Thank you for all the info on smoking.. I do know this is a really bad thing..

Ok I have one,, again myth or not???????

I was told yes at work,,,,lol

"if everyone had Mri's of their brains  99.9% us will have lesions, this is "normal"

are you kidding me??????????

what do you think?????
Ray

[doublevision1]

Kathy, thanks for your post and I do hear what you are saying.  For me, my reaction (in my head) when friends have made the "you're so strong" comment to me, is that twofold:

first, I'm really not so strong, certainly no more so than them.  I don't say that in an aw, shucks kind of way. I just really am not.  I try to hide my true feelings of fear, shame, and sadness as much as possible, and tend to use humour to deflect.  This isn't strength so much as it is denial and a pretty good defense mechanism.  

Second, I think, short of completely falling apart, most people faced with the same news would just do what I'm doing, which is put one foot in front of the other and keep going, because what else do you do?  I do appreciate the sentiment of your post.  It's not that I think people mean to be patronizing, but rather that it may be received in that way.  

And you're right, we are generally a well behaved bunch while on the forum.  I don't think you'd think I was so special if you heard me dropping F-bombs all over the place like I do at home!   LOL  

Cheers

db

[doublevision1]

Quix: I didn't arrive in the north till age 30.  Prior to that I moved around the southern regions.  However it is all north by U.S. standards!  (except for Alaska of course).   Yes, I was sad to learn that Canada does have some of the highest rates in the world for MS.  Lucky us.  As you say, I'm sure my risk factors have a lot more to do with that, than living in an oil producing region.  Thank goodness at least I don't have asthma.  

db

[AMO]

"Well, you don't LOOK sick"
or.....
"Well, You Look good"

always wondered what 'they'  would saay if we would wea r our damaged brains on the out ide and they could see them?? hum

[pennst8r]

I've gotten the you're too old (symptoms started around 40), also the MRI when symptoms began was clear, so you can't have MS.Also got that I cannot have it BECAUSE my sisters both do.

Penn

[Fluffysmom]

I just had to comment on your earlier statements about people saying wonderful things about people with MS.  I'm sure its very true that there are a large quantity of people that don't "change their spots"  just because they have a diagnosis.  A rotten person would probably stay rotten.

I have been guilty of telling people on this forum how strong they are, because I am in awe of all they go through and still work and raise a family and all that.  I can't generalize, but so many of the people on this forum seem pretty amazing to me.  Of course, we can't use bad language and let it all hang out, but for the most part, I've met some strong, special, and brave people here.  

I'm not being patronizing; I've really felt inspired by these people.  You're one of them.

respectfully,

Kathy

PS.  My issue is with "your tests came back just fine"; when I got the results, I found out very few mimics had been ruled out.  My sx are still around, the lesions are still in my brain.  I'm not "just fine"

[hbananas]

Please allow me to expand on the "God won't give you anything more than you can handle" myth.  I respect your atheism completely, but this particular believer heartily agrees the myth is B.S.  God doesn't give people MS.  He also doesn't cause car accidents, wars, or cancer.  Stuff just happens.  Just my opinion, heavily formed by the reading of "When Bad Things Happen to Good People."

That separation thing is so true.  I find myself doing it--My friend is being treated for her third bout with cancer, the first round being melanoma.  If I can tell myself "She got that because she got severly burned as a kid--that won't happen to me because I wear sunscreen," somehow it makes me feel protected, even though I know I'm lying to myself.  We (at least I) look for some reason to blame some behavior or circumstance the victim has, that we don't, for their problems, falsely immunizing ourselves.

Holly

[jensequitur]

No matter the source, if it's a myth, let's put it in the entry.  However, I'm looking for false information like mercury fillings or oil production causing MS, rather than the misconceptions of our society about MS.   We'd never stop if we started that!

[Quixotic1]

Should we combine medical myths we have been told by our neurologists along with society's myths?

Let's collect them all and decide then.  Actually I might actually throw a temper tantrum if we don't get to have a "lies My Neurologist Told Me," page.  I don't care who writes it, but, I'll scream if I hear, "You are too old," or You can't have MS with a negative spinal tap," one more time!

Jen, whadya say?

DB - yes, "We can't diagnose MS right now" is a far cry from "MS is ruled out!"

Actually, DB, the latitude of your growing up in Northern Canada likely has more to do with it than the oil industry.  Some parts of Canada have an MS incidence of as low as 1 in 250.  Others more like 1 in 375.  Canada has one of the highest MS incidences in the world.  

Q

[doublevision1]

cz: right, the whole "MS has been ruled out" thing, despite continuing to have classic MS symptoms, only to later find out it was MS after all, so how can they ever say "ruled out" when it might just be to early to tell?  I got that one too.

LA:  So if kids cause ON, then I and all those who also choose not to (or can't) have kids are in the clear?  good news for me.  lol!


I just remembered something; my mother speculates that I may have gotten my MS from the area I live in, in Northern Canada, in a town where there is much oil production going on.  I remind her that all of her friends who have MS live in rural areas with lots of fresh air and no industry around for hundreds of miles.  She just goes, oh yeah, that's right.

[cz1970]

Ok here's one.... "The MRI is negative so it's not MS and just go on with life." Meanwhile your falling apart with every symptom of it....!!!! OMG!

cz

[LATW]

Ok, that post was out of order.  I added a few things and forgot to rearrange. Sorry for the goof!!  

LA  

[LATW]

She made me feel so stupid for being at that appointment. She was nice enough and even flattering.  

I am a good parent, but how did she know. She had just met me.  

I left there and decided to forget the whole thing. I came home and put all of my records away.  I meant if kids caused ON then what was there to worry about? :(

I was very offended by her suggesting I needed to get away from my family. That is just not the case at all.  I would be much more stressed and worried if I was away from them. I have small children.

Once she heard we have 7 children she totally dismissed everything. I didn't even bother to tell her five of the children are adopted and four of them have Down Syndrome!!  She probably would have committed me right there!!

I wanted to throw them away but thankfully I didn't.

That was in September. By January I had a second bout of ON going.  Soon after that I went to a REAL MS doctor and was diagnosed very quickly.

I just cringe when I read what others are going through here.  I am SO very lucky to have a great MS clinic in my state. I was not able to go when the first bout of ON came on because of insurance.  


LA

[alastria]

"If you learn the lessons that this illness is teaching you, you'll probably be just fine."  This one drives me nuts!

As far as myths of the causes - people have suggested that I work too hard, lead poisoning, mercury fillings, being from New Jersey (seriously), aspartame, dehydration, the hygeine/anti-hygeine theory, and parasites.

I know for myself denial about my diagnosis has been an issue (I'm fairly new with it) and I think the people around me are just in denial too so they suggest that anything but MS is causing the problems.

[jensequitur]

DB, I think what you said is true for any serious disease!  Having a disease does not automatically make you a better person; in fact, it's usually the opposite.  Some people take their disease and use it to push other people around, some people binge on chemicals, some people just withdraw and become hermits.  I think people say "They're so strong!" because they feel badly for the afflicted, and that's their way of participating.

Hey, Ray - I think that smoking won't make your MS worse, but neither will it make it better.  Smoking cigarettes causes damage to your body, and so you're doing a little healing each day to recover.  What I would recommend is to keep your consumption down below six cigs a day, if you find you just can't quit.  After about six, the cilia in your lungs get lazy and stop moving the yuck stuff around, which is why people who smoke a pack a day end up with a bad morning cough.  Those cilia in your lungs are all rested up and moving stuff around in the morning, but after a cigarette they lay back down.  (Which is why smokers say that the first cigarette fixes the cough!)

I used to smoke, and miss it especially when I've had a couple of beers.

[doublevision1]

I also got the "aren't you too old to have MS?" (dx'ed age 39).

Re: your ON.  Wow, that was quite the line of reasoning from that doc.  Going from you're a good parent (I'm sure that's true) to all good parents are stressed (not necessarily!) to you need to exercise, hence you have ON.  And that this came from a neurologist.  Oh dear.  Is all I can say to that.  No wonder you left there still wondering.

db

[LATW]

These are some strange things that have been said to me...

"Aren't you too old to have MS?"  (I was dx'd at 44 after several years of on going issues)

I went to a neurologist because I had Optic Neuritis and she told me I was a "good parent and good parents are stressed. You need to take time for myself and exercise."  

I left there still wondering about the ON and lesions on my MRI????????????


LA

[RAY911]

This is a question,,,

I'm not sure if this is a myth but is it true that smoking ciggarretts can make MS worse??

I've been told this.

Just wondering
I'm not proud of it (at all) but I do smoke, I'm trying to quit.  Its hard!!!

Thankyou
Ray

[doublevision1]

How about any statement that stereotypes people with MS:

For example, people with MS are so "brave" "strong" "special" "________" (insert annoying and simplistic and patronizing stereotype here).

Fact: People with MS are as unique as anyone else.  We are not all the same by virtue of sharing a diagnosis.  Some people with MS are jerks.  They may have always been a jerk.  Being diagnosed with MS didn't suddenly change them into some noble being.  Some people with MS are not strong or brave at all.  They can't cope and end up doing really self-destructive things, drinking, drugs, binge eating, whatever.  The high suicide rates of MS patients would illustrate the extreme end of the spectrum.  I know a man with MS who developed serious alcoholism in response to his diagnosis.  He is verbally and psychologically abusive to his family and treats them horribly despite their constant support.  His behaviour is not very "strong" "brave" or "special."  

I know people say this thinking they are being kind, but it does annoy me.  I'm no more strong, brave or special than I was or wasn't before MS.  I recently read a perspective that these stereotypes are a way that those who are healthy may use to distance themselves from those who are ill, lumping us all together to create a we/them separation.  I thought that was an interesting analysis.

For me, another stereotyping kind of myth about is the "God only chooses special people to have MS / God doesn't give you more than you can handle."  I mean no disrespect to anyone here who truly believes this, and may somehow take comfort in thinking this way.  So I'll qualify this by saying that as an atheist, from my point of view, this is a myth.  I say this not only because I personally believe there is no God, but more to the point, because not everyone with MS is so special/strong/wonderful. Not everyone with MS can in fact handle it.  Some choose to end their lives because they can't.  I will add that one need not be an atheist to disagree with the concept, as stereotyping based on religion is no more logical or acceptable than stereotyping people with disabilities.

With all respect to the diverse members of this forum,

db