Here,Here I too am skeptical of all the vitamin hike. I prefer a little wine and dark chocolate..but i think the key thing is that we try to eat as healthy as we see fit or can tolerate ...different diets work for diff.people and whatever diet psychologically( and physically) works for you..great. some people have other health issues and must be on a certain I am on prednisone and have to increase protein,lower fats and carbs. but wiil do soo reasonably. i like to eat my veggies not drink them. oh and i do take Vit D because my blood level was low so with that kind of proof i will take a vit. Maybe eat what you want see how you feel afterwards if you feel worse or crummy then you know to avoid that otherwise enjoy life!! I do know too much Vit A D E and K and be harmful!!! (my 2 cents).

Willeke -

You made my jaw drop! I was just thinking yesterday of making the exact same comment but I think you made it even better than I would have (I tend to be more of a lightning rod, if you know what I mean :-).

I absolutely agree that there's nothing we did - or did not do - and nothing we ate, or didn't eat, that brought on our MG. Nothing pisses me off more than to have some hippie tell me that I could get well, get rid of my MG, if only I'd eat their (outrageously expensive) diet plan, take their (astronomically priced) supplements or organic vitamin pill.

I guess it's not just the fact that these charlatans have no FDA data to back them up - only their hippie research foundations - but it's the smug sarcasm they give you when you decline their kind offers to pick your pocket that really sends me into orbit.

Agreed - a good diet, multi-vitamin, rest, and a glass of red wine now and then, is probable all we really need to do. Of course, you do know that we Newfies are tough and drink Screech instead of red wine. It's what makes us so lovable. :-)

Curt

good topic... I am so with you, we got MG because we did.. I have had several people say so how did you get this.. duhh..

I agree, if you eat right, what is the problem?
I do take a multivitamin with herbs in it for digestive and stress support, as well as some protein supplement when I am not getting enough protein in my meal at times, but all I suggest is that we eat right. I don't always eat right, so I supplement as a result at times.

I am one of the first to jump on here disputing the snake oil promotion that goes on in these circles. I was in the main Facebook group a while back and left because of the encounter I had with a gal trying to tell me and everyone how gluten free etc was going to help MG...She claimed she was going to provide a link for proof. She ended up blocking me as many started to question her, awaiting her link that was never provided. There is no proof in this stuff...No science behind it. I ended up leaving the main FB group as as result.

Thanks for your post as another reminder.

TJ

BC, I agree, even though I am one who supports organic foods, juices, I used to fast regularly and guess what......look at me now! :0 I can only speak for myself, I simply FEEL better when I consume more veggies and less meat and processed food. Is it going to affect my symptoms for better or worse? I don't think so. There was a time when I could have put up a good arguement though in support of vega-orga-grain fed-foods. In fact I'm staying away from all supplements for the time being until I know what I may be lacking. I need to find the right meds first.
All opinions are appreciated here, so I quickly found out. Keep them coming BCCanada. (I lived in Vancouver for 3 years in the late 70's....fond memories of some wonderful health food stores / restaraunts!) Tofu anyone?
Larissa ;)

I always think of what they say about what is good for the goose is good for the gander. Well, it's not a true statment. Everyone is as individual as they can be. I think you can all say that this disease has as many different symptoms as there are people that have it. How can one size fit all. I am just starting out with this, the unknown. I may be in bed in a year, or do well when they start these stupid meds. I may do ok without pred. or may have to have it and become unrecognizable because I have that look already. I may have to stop taking some other meds that could be a disaster, or not. I have a horrible diet, well I think. Is that why I have the two diseases that I do, They are both hereditary. I could have altered them a little by taking better care of myself,, but maybe not. I have a mother who if there is sonething wrong with someone it must be because they didn't do this, or did do this. Now they are not only sick, but they are being blamed for being sick. Exausting. It just doesn't seem like a black and white, but very grey kind of thing. To each the power to care for their own bodies in the way they see fit. There's my wooden nickle!

Agree my neuro says no supplements or vitamins only fresh fruit and veg etc

my worst is when someone says how did you get mg like I am contagious or that I did something to myself to cause this my reply is if i new where it comes from they would have a cure

Maybe you ought to try a better diet and see if you do feel better.
Ann

One of the points raised, at a local MG meeting, back in November - was this:
Why are so many of us, routinely taking vitamins & supplements? Particularly, when MG causes: an over-active immune system. Not: an under-active immune system, that needs to be boosted with vitamins & supplements.

Yet there are many of us, who do suffer from documented nutritional deficiencies. There are relatively easy tests, to determine most of these deficiencies. Short of that testing? We should probably go easy on vitamins & supplements, in general. (I have a chronic problem with Vitamin D, which my Neuro detected with a simple blood test. I also have a couple other nutritional deficiencies, which were also determined by a blood panel. Why, the deficiencies? I dunno - it's not diet. The doctors & researchers don't know either. Any ideas?)

Having said that? You will find me: squarely on the side of eating healthier. By eating food, that is not highly-processed, or mass-manufactured & shipped from 1000s of miles away, by a giant international conglomerate.
When possible, we eat more foods from the organic side of things. From our local farmers & businesses: this keeps money in our local community, reduces the expensive petro-costs of shipping, and reduces other costs of cross-country shipping (more pollution, for example. An externality - to use the economic term).

In our personal pantry at home, at least half of the food - is organic. If only to avoid: the pesticides, poisons, preservatives, antibiotics and hormones - routinely used in giant agro-business.

I worked several years, at a local farm-supply store. If you knew? About the neurotoxins, routinely placed on your foods? To kill pests, or reduce spots? Used even by local, small-scale, non-organic farmers? All done and never revealed, on any label?

You would run screaming, to the nearest organic-food store. (Today: most organic foods, sold commercially, are rigorously tested for poisons. In most states, organic crops & soils must be free of contaminants for at least 3 years - before it can be labeled or sold as organic. It usually takes another 3 years before that - to reduce contaminants enough, to even begin testing. That means an organic farmer, must sell his crops as non-organic, for those first 3-years.)

Yet a concern for costs, is also needed, with organic products. I've started buying some frozen juice-concentrates recently. Exactly because Curt pointed out, the ingredient label states: 100-percent juice, no additives, period. And at much lower cost, than any other form of juice. (But I wonder, because I've seen this sort of thing, personally? What did the farmer spray on the crops, before harvesting? This is info - not reported - on the label.)
Anyway - I'm buying it.

I don't know why - we all have MG.
Look at us, here in our support group.
We are all - as different as can be. From all around the world.
There is nothing any of us ''did'' - to become afflicted with MG, or any of its nasty cousins.

I've had the same experiences as BCCanada - and probably most of you: having to explain to someone, that MG is not ''contagious'' (Cue: the villagers, complete with lighted-torches & pitchforks.)

I'm not forgetting our friends here, who have a type of MG, that is transmitted within families. True, it's a small-percentage of all cases of MG. But it's also a well-known fact, to both these families, and to MG-researchers.

Here's something, that I - can - give you some info about, another neurological disease.
MS, multiple sclerosis. Particularly in Maine. (Thanks to my friend Sandy, who has been studying these matters, at a national level, for many years.)

In our beautiful lakes & streams, here: Maine has some of the highest-levels of mercury-contamination, of any region in the US. We are routinely cautioned, here: don't eat the fish you catch!

Yet these high-levels of mercury are mostly dropped on us: in the form of acid-rain. From industrial-activity, hundreds or thousands of miles to the west of our pristine freshwaters.
(Don't worry about Poland Spring Water, folks. That water is pumped from hundreds & thousands of feet down, far from any modern industrial pollution. Think ''Ice Age''.)

Further: local watchdog groups in Maine, and State & Federal agencies: have produced a map, showing those areas in Maine, with the highest-levels of mercury-pollution.

Here's the 2nd-part: Maine also has - one of the highest incidence-rates of MS.
Again, measured & demonstrated by local watchdog groups, and State & Federal agencies. Yet these are not the same groups, mentioned above. These second groups: have also produced a map, a different map showing the highest areas of incidence of MS, within Maine.

The 2 maps: the highest-level of mercury-contamination. And then, the highest-incidence of MS?
They overlay & match each other, almost perfectly.
This is too high a positive correlation - for these facts to be ''mere coincidence''.
In Maine: mercury, a well-known neurotoxin - and MS, a well-known neurological disease? They are both occurring in the highest-incidence - in almost exactly the same towns & counties.

There is a middle-ground, to almost everything. Some mass-produced foods are probably safe enough - to feed to anyone. But the organic-food folks: have way too much science, supporting their claims - to be dismissed, out of hand.

100-years from now? I wonder if the people living then - will scoff at us? Because we didn't see the obvious causes and cures of MG, back in 2012.

Sorry to run on.
Thank you DS, for giving us a way - to all meet together!
- Ross

While I agree as well. We did not do anything to bring MG on. We can help ourselves as much as posssible. I do take vitamins, like Ross said, blood tests to determine what we are difficient in will not hurt. I was deficient in vitamin D, B, Potassium, DHEA, Pregne nalone, Testosterone and a few others. I eat very often throught out the day, keeping my protein high and stay away from all processed foods and any kind of nitrates foods. I juice my own fruits and vegetables. The last time I had an alcohol drink, my balance was off for a few day's, talking was an issue as well. I know, for me anyway, that drinking any kind of alcohol has a bad effect on me. I used to like to clean my house with strong cleaning products, I noticed the day after I was on my back, now I stay away from any kind of cleaning products as well. Sleeping a full 7 to 8 hours a night is also very helpful. In the end, we all do what works for us.

Being sensitive and listening to our body's even when taking meds is important. I recently was dx's with Asthma, the Doc gave me an inhaler, I was to take 2 puffs in the AM and 2 puffs at night. In just a few days of doing this, my breathing was better but my MG was bad, yesterday was a waste for me, I was on my sofa all day. Today I still feel the effects and will stay away from the inhaler.

I liked your comment and it makes me feel better. My partner who passed away last year from MG complications, was an extremely healthy person. Not obsessively healthy but he ate a good mix of the right food groups, only junk food very occassionally. He ate a bit of red meat, fish, chicken and all fruit and vegetables. A bit of chocolate or ice cream occasionally. He never over indulged and was mindful of his weight and fatty foods. He had only been drunk once in his life and would have half of glass of wine or a full glass with dinner. He gave up smoking thirty years before his MG started. Before his MG started he walked to the shops and/or did an afternoon walk daily.

I sometimes blame myself for his condition. I used to swim a lot when he was alive and if I hadnt showered he could smell the chlorine a mile away. He was pedantic about rinsing the detergent off the dishes and hated me using household cleaning products. I do like things clean and always hope it was nothing I did which aggravated his condition. Or was he just unlucky to get this disease?

I love what you had to say Willeke and I agree. I recently bought a high powered mixer to make smoothies but not because I want to drink my fruits and vegetables, more because I don't want that pain and difficulty of swallowing with the nasty slow swallow. I'm not sure it will work, especially with cold smoothies. I will make that a post of it's own though. Thank you for saying what you said. We didn't do anything to get MG, we really can't change the course by behaviour and I agree we need to be very cautious to not fall into the thinking that boosting our immune systems will help when it's our overactive immune systems that are the problem. Such a contradiciton.
Cathi

If we are having symptoms - our immune system is working for sure! I had taken supplements and have backed off for this reason. The one thing I do know is that there are a number of publications in medical journals linking inflammation to worse symptoms of MS (one recently in the Lancet journal). Of course this is not our disease but we all know that when we get a cold - we have worse symptoms. Chronic inflammation is also linked to poor diet. So I do try to eat right...and on days I eat badly - like the superbowl...I do notice a difference. ...but I had fun at the superbowl party! Nicole