My moms theroy is me working nights and not getting enough sun.. Not to mention that I am overweight. I dont drink so thats out but yeah the weight comment gets me every time. Like being thin would have avoided this!

My sister has convinced my Mum that it is allergic reaction when I have a flare up or else I am a hypochondria & attention seeling so talk myself into the bad times.
I dont talk to my sister now & keep control of what I tell Mum - very little.

MY GOSH, EVERYONE TELLS ME, IT'S DUE TO BEING UNDER WEIGHT, AND FROM STRESS........................LOL...............................I BLAME IT ON MY FIRST WIFE, SHE WAS REALLY A JOKE...........AND NOT TO MENTION, I WORKED FOR THE POST OFFICE FOR 23 YEARS.................................

I have had so many people tell me it is because I use to drink diet drinks, and the aspartame is the reason, or that because I eat sugar things, like a cookie or a Twinkie now or then.
Honestly, I don't drink alchohol, I don't smoke, never have on either account. I don't eat dairy products, or things with seeds or nuts, due to my other health conditions also...so, I get a little irritated when I get chastised for a simple diet drink or sweet now and again!

I know the intentions are meant to be kind, but, I just don't know why they think that articles in the paper or on the internet are foolproof! I research many things, and base my intake on what I consider to be true statements about MS.
Thanks for everyone's imput here!
Sherizi

I was told by my mother that my MS was caused by my use of equal and sweet n low. LOL

I can't even begin to tell you the things I've heard or the things that people have suggested to me as cures.

I got it because "I was working too hard and being too stressed." (that's most common.. umm.. sure??!! that's not uncommon? Wouldn't everyone have MS?)

So far, besides worms, the best cure is that I should be eating clay.
yeah.. maybe they should try that.. doesn't sound too yummy.

I've had friends try to figure out why in the past. I use this opportunity to educate them on the disease. If i am not mistaken we carry a gene that gets activated by coming into contact with a certain virus. This makes our immune system overreactive and it attacks the myelin in our bodies. Doctors can not say what triggers it for sure. if it was what we ate, our weight, or our partners that stress us out, we would not be the only ones affected. The whole population could lay claim to this. Do things we do contribute somewhat? I am sure in some fashion they did. But every one of us has different lifestyles, body weight, symptoms vary, etc.. There is still so much we don't know. I let my freinds in on those thoughts.

I guess I'm fortunate that I don't have people telling me what caused my MS all the time! But EVERYONE has a treatment or a cure . . . that's a double edged sword, though. It was my sister-in-law excitedly calling me up on a Sunday evening to tell me what she had just seen on W-5 that put me on to CCSVI, so I don't complain about the input anymore. :) I have a girlfriend who suffers from frequent depression and she somehow equates our conditions! Every time I talk to her, she tries to cojole me into going for a brisk walk because the fresh air and excercise is what the doctor prescribed for her . . . she means well, she just doesn't get it. Maybe next time she suggests this, I should agree to go IF she attaches a 30 pound weight to her left leg, wears someone elses prescription glasses to distort her vision, a straight jacket to limit the mobility in her upper body . .. now we've levelled the playing field a little - let's go for a brisk walk, it'll be fun! :)

Haha, yes, I get this too! I have to explain it a lot of the time, but realistically my having MS is less related to a certain 'lifestyle' than is their being overweight, or having high blood pressure, etc., etc. Still, I have no doubt they're trying to be helpful -- but people often don't know that the best way to do so is often to shut up and be there for each other without judgement.

And I'm with you Leesey, it's also annoying when people just know the cure and wish to share it with me. Even two of my dad's siblings, who both have MS, are pretty overbearing about that, with advice that contradicts one another, because everyone's disease is different. More recently, an uncle -- married to one of the siblings -- cornered me and started to tell me about how much harm I was doing to myself by being on Avonex instead of pursuing holistic avenues.. after all, this is all just a diet issue and I would be fine otherwise. Right, that's what I need to hear!

I get the aspartame email forwarded but I always hated diet drinks. I did avoid the sun for years because of warnings about skin cancer, and have taken vit D for awhile, but I can look back to early signs of MS when I was in my 20s and lived in the sun. I just have it and probably gentically coded since birth. I used to explain all this. Now I just let it go.

i always set people straight, in a very nice way. Until a cause for the disease is found everything is just a guess. Even the virus theory is still a theory.

the aspartame thing is an urban legend. If it were true MILLIONS of people would have MS. the same is true for stress, smoking, weight, whatever else people like to blame on it.

the best one I get is that I should drink some kind of $50 dollar a bottle drink thing because it's supposed to reduce inflammation...... o.O

I haven't had people telling me what caused it, but I sit next to someone whose cousin has it and 'you wouldn't know she's ill. She's always fine'. Well either she is, and I'm delighted for her, or my colleague just hasn't realised that she WON'T EVER SEE HER ON A BAD DAY!
And mum, while being lovely and trying very hard to understand, still thinks fresh air and a good walk will make it all better. Sure, the exercise and fresh air are wonderful for the spirit, but the further we go, the longer it takes me to recover and be ready to go again! I'm just pleased she tries to understand - my family are brilliant.

I found that people are so distressed that they or I can't control what is happening that they share their cures with me. It is easier then admitting or understanding on a spiritual level that with this disease there is little control. I am doing everything I need to with my diet and exercise and realize that that is all I can do. Now friends and family get that also. The next big hit physically will bring everyone back into reality including me.
I was getting the cause thing all of the time. I teach in a room with no windows - it is environmental. I am overweight - diet related. I run around with my kids all the time - stress. I should take one of the drugs that help so many - for PPMS there aren't any yet. I teach in an urban district - stress... You all know the drill.
I have MS. I deal with it as best I can, like we all are. What I am doing is helping because at least I feel can do something.

When I was first diagnosed I used to get a lot of people telling me of someone they know with MS and THEY don't even use an expensivew medicine for it...Like I was personally driving the health care costs up by taking an unnecessary medication for it.

I began asking detailed questions ad nausau, until thos people began to understand they they really don't know anything about the person with MS..how were they diagnosed? what tests did they have ect. The person would have to admit they don't know....then I would launch into great detail abot MS & I know a lot of details, how the meds work, the differentr diagnosing stages of MS the hidtory of MS treatment, how all the tests are done and what the test resultas mean...where lesions are and the effect they have depending on location, T2 volume load, the role ag dd- dye in an MRI, how an MRI worksd...ect....

By the time I had just started they were nearly running from me....making.h the polite comment "well its getting late I've really got to get going" I was merciless I would ignore the comment or I would start thanking them for being willing to listen.....NO lie if it were the New York city marathon, they would have broken the record at the speed they used to get away from me.....

And I was satisfied and pleased and they would never bring the subject up again with me. ;-)

A few weeks ago I had another variation of this, that I'm internally processing. It was from a woman who has been very kind to me.....
She said she admires how much I walk despite the stroke.....
I explained that I didn't have a stroke, I have MS and I'm lucky it is MS and not a stroke because I stroke is much worse....I said it was no big deal walking for me because I live to walk. Before MS, 5 years ago I used to walk on nature trails between cities about 30+ miles in one shot. So now I walk, just much less because I love to walk. I walk to gorcery store(1 mi) & Mac&D's(2 miles) & my parents house(0.5 miles)...so people see me walking a lot which is unusual for health people who drive when they should walk and feekl guilty about it.

She answerd "its MS? but you look so healthy"

That's were I'm uncertain. I like that she thought something was wrong with me-a stroke-so my effort at walking is visible, its not invisible- so that makes me happy. It would be more frustrating it wasn't apparent,if I used my disabled parking permit when an effort wasn't visible...by the way I only use my disabled parking permit in winter when the ice makes it difficult for me to remain upright. Yes I walk a lot but under ideal walking circumstances.

And the other uncertainty is, the thought that I can't have MS because I appear healthy like all MS is wheel chair bound or it's not
real MS :( Maybe I have to develope a second speel for that one?....

Something about how its a minority of people who end up in w/c then start talking about the many different ways MS affects people, but they still are negatively affected by MS. And how MS progresses & one of the wort symptoms is the fear and uncertainty of how it will progress?

I rally am uncertain about that one, she has been very kind to me because she thought it was a stroke?

In both situation I didn't bring MS up, some asked me why I was like I was.... in both cases. I replied because I had MS....
One response was the knew someone with MS that doesn't have to use any medication for it
&
One response was I looked too healthy for MS, I looked more like I had a stroke?

But I did not bring up that I had MS in either case, I responded I had MS when asked what was wrong with me.