I wanted to add that I found the old article on these forums regarding Manganese and saw that the link written in my post has already been discussed.

My stepfather who recently died, his sister, as well as his mother all had/have MG. They were all very young in occupied Europe during the second World War, growing up malnutrition was a very serious issue for them. The onset for the sister and the mother was early in life, and for my step-father later in life as described in the article.

MG is an acquired disease, and not one in which you would have a genetic predisposition, which is why I believe it had something to do with malnutrition, or possibly crop pesticides.

As far as I can tell the author of the article is not trying to sell anything with regard to MG, while I do admit he is selling information on other diseases.

"Myasthenia Gravis World War II" based searches on Google produce a multitude of articles.

Intertesting that the B vitamins greatly improve my quality of life (pain, leg cramps, energy levels). But I'm not sure if I have MG or a mitochondrial disease (helped by B vitamins) which is genetically related. I might be unlucky enough to have both. I'm sure good nutrition helps most autoimmune diseases.
Flutebell

Very interesting reading I suppose in rare diseases there are many unknown facts and people we never hear about. It intrigues me how we have so many more illnesses vs 100 yrs ago. Or did patients die sooner before any cause was found vs the #people in world now with intense world travel and communication avaib?

Walter Last also tells us that love can cure cancer. http://www.health-science-spirit.com/lovecure.html

While I do not like the title of the article you are referring to, I consider it to be more contextual than factual. My take away is with cancer, MG, or any disease for that matter, the power of positive thinking can't be discounted.

Henry Ford says it in a much more precise, and less flowery way, and I quote:

"Rather you think you can, or you think you can't, your're right."
Henry Ford

The majority of alternative information tends to be on less than scholarly websites, which is why I asked if anyone here has tried these things themselves. Walter Last is not the only person discussing this information, it is just the link I chose to use. I will look for a better one, including the one where it was discussed at Harvard University sometime in the 1950's.

I believe that most of Last's work has been discredited... beware, please.

Walter Last may not be the best source of information, and I certainly do not claim that anything he says is correct, so please don't misunderstand my intentions.

However, with my Stepfather, his Sister, and his Mother, all three having MG, I think the World War II connection and that fact that they lived in Europe while very young during this time is not a coincidence. The neurologist we were dealing with had treated 50-75 MG patients, and had never seen or heard of three direct family members having the disease.

There are many conspiracy theory websites that claim that Hitler developed MG and sprayed enemy crops with a pesticide that would cause people to develop this disease, but that is just another rabbit hole, and there is no way to prove or disprove this as far as I know.

For those of you that have MG and survived a crisis, did your doctors recommend any change in nutrition, supplements, etc...?

Please disregard the Walter Last article for the sake of not wanting to derail this thread from its original point.

Thank You,
Jon

Another thing Walter Last was not wrong about with regard to my Step-Father's illness is this:

"There are frequent side effects from drug therapy, such as abdominal cramps, diarrhoea, nausea, vomiting, excessive mucus formation, bronchial spasms, twitching of face muscles, spasms and freezing of muscles, tremors, incoordination and paralysis. It is easy to overdose with a resulting 'cholinergic' crisis often resulting in death."

The excessive mucous formation did not begin until after he began taking the Mestinon and other drugs. Once the mucous started it kept getting worse, and they never could stop it, and ultimately that led to his death.

This appears to be a con man. One click into the article and there was info on how you could buy Mr. Last's book.

You know what they call alternative medicine that's been proved to work? - Medicine.

~Joe

I did not pay anything to Mr. Last or anyone else for the information listed in the article.

Regardless of the feelings you may have regarding his book sales, I still believe that the World War II connection, and the excessive mucous formation caused by MG medications to be factual. Not based on his writing, but based on the fact that I was there to watch him die, and I know his family history.

I am trying to make sense of what happened to my Step-Father, nothing more, nothing less. The Walter Last argument to me is irrelevant.

Up until the summer of 2014 I had never heard of this disease. The article written by Walter Last was used as my example because it most closely related to my specific situation, which leads me to believe there may actually be "SOME" merit to his content.

I have been a daily reader of the Wall Street Journal for over ten years and I can tell you that Western Medicine is full of people far worse than Walter Last.

Merck has paid out over 6 billion dollars to patients and shareholders over the drug Vioxx, which led to strokes and heart attacks to thousands of patients. Of course they never admitted any wrong doing, but 6 billion dollars should speak for itself.

A man named Martin Shkreli raised the price of pills given to children and AIDS patients from $13.50 per pill to $750.00 per pill so he could try and pay back the money he stole from his previous employer, using Turing Pharmaceuticals as his own personal piggy bank. He was arrested by the FBI.

The point I am trying to make is that there are bad people in both Alternative and Western Medicine. To simply believe everything about Western Medicine to be superior to any alternative is a mistake. Western Medicine can perform wonders, for that I have no doubt, but it is far from perfect. The American consumer is the most price gouged consumer on earth with regard to healthcare. I know that someone will argue that it takes 350 million dollars to obtain FDA approval for a new drug, so let me save you the time, that is absurd. Obamacare would have been so much better had it addressed the real problem which is cost, instead of just focusing on increased coverage. Hopefully someday someone that understands how to run a business and convict the people robbing the tax payers will be in charge, until then the current state of affairs will remain the status quo.

I ask that anyone that has any more to add about Walter Last either start a new thread or send me a private message, as it was not my intention to spend all of my time on these forums defending him or debating your positions on Western vs Alternative Medicine.

I was simply asking if any current MG patient has any experience with alternative drugs, or change in diets and supplements that they have found useful.

Thank You,
Jon

Sorry to be so dismissive, Jon, but we on this list have a serious illness. People come here with the exact same disease looking for answers. There is a standard treatment for MG, and if you are lucky, it will work. If not, there are a lot of work-arounds, and the literature is always expanding. Supplementing our diets doesn't work on Myasthenia Gravis. In fact, in the great majority of cases, the supplements themselves don't contain the supplements advertised on them because it is all unregulated commerce. (See the Frontline documentary "Supplements and Safety" that aired last week on PBS. ~Joe

Rare diseases have few pts therefore little revenue for drug cos.also there are few pts to test meds etc on which is an important part of discovery and research . That's 1 reason why rare diseases have many folklore type cures,causes etc! As with anything in life if it sounds to good to be true then it probably isn't and buyer beware.I'm took skeptical to buy drugs online even legally except my mail out rx plan.

Wow the Meds they give you could freaking kill you?!???

Is that if you take too much? This just gets worse and worse for anyone researching this.

This is the craziest thing I've ever seen.

They say it comes on from emotional stress. And then all the symptoms are all but dreadful and strip you of your sense of safety. And peace of mind. Especially if you have children!

What's worse is outside of an obvious droop in eyes is the other symptoms can mirror anxiety, adrenal fatigue, CFS, MS, etc etc.

And I've even read that many people who check for this whom come up negative STILL believe they have it. How can you know for sure??

Before the 1960s when anti-immune system (prednisone at that time) therapy was adopted for MG, about 60% of folks who had MG died early from it; about 40% in the first 3 years (and many of those in the first year).

After prednisone and other immune system treatment combined with mestinon, our life expectancy taking standard treatment is about the same as a person without MG. Our lives are not normal, but we don't die from MG early.

Of course the medicines we take are quite potent--they have to be to stop our immune system from producing unwanted antibodies. Our most at risk period is when if we are first diagnosed when MG has already advanced to the crisis level and we are unable to breath unassisted and during the time we are waiting for treatment to begin to work. IVIG, PLEX are life saver's when we are in that condition.

The folks who have passed away who were members of this group that I can remember, almost all had MG that was a side effect of cancer, or they had MG and another condition--and the other condition was the culprit. There are still a few folks who die ahead of schedule with MG, as you can find if you search on the internet for "obituary" "Myasthenia Gravis" but almost never from MG alone. The two I know who passed away from the group, Curt and Elinor, died from cancer not their MG.

A retrospective study in Norway showed that after 1996, MG folks died from the same causes as normal folks, but before that more often respiratory problems -- meaning treatment in Norway after 1996 has had a good result. Search the internet for Myasthenia gravis death and see what the studies show. Treatment works for most of us, especially if we don't have other conditions that are also life threatening.

Do you really want to RISK YOUR LIFE on some internet doctor's pills or buy his book to take the place of what your experienced neurologist tells you? Not me!