Hello all-

I have been gone from this forum for many months. I originally posted earlier last year after I had been diagnosed with MG. I was experimenting with alternative methods of treatment at that time.
I am returning to post what I have learned in the hopes that it may benefit others who suffer from this rotten disease.

A quick synopsis - I am a 57(now) year old male who on 7-10-09 awoke with a VERY severe bulbar form of MG. No problems or hints prior to that. Previous night fine, next morning literally paralyzed from the neck up. I won't take time now to describe all the symptoms - suffice it to say that anyone here already knows. I was serum positive (high) for the three markers they test for in the blood. Two neurologists came up with the same diagnosis. My symptoms were severe and matched those of the folks on this and other forums. I had MG and I had it bad.

Long story short. I had decided that this disease did not fit into my long term plans! I naively believed that a certain set of circumstances caused it to happen, therefore a certain set of circumstances could make it go away. Thus began many, many, many hours of research on the internet. Using the knowledge of those many times smarter than I will ever be. I decided upon a course of action and stuck to it.

During this time - and against all threats and advice from my doctors, friends and family - I did not take any medicine or treatment for the MG. I did not want to mask any symptoms as I would then not be able to tell if anything I was doing on my own was working or not. No mestinon, no prednisone, no nothing. Scary? Yes of course! When every doc tells you that if you don't take these drugs you will probably die then yes, that's scary.

More long story short - I made dietary changes, added some daily supplements and went forth with perseverance, patience and prayer. Four months later I was symptom free and have been now for the past 6 months. It was SLOW improvement overall. Not every day was better than the previous day, but every week was better than the week before.

I have kept this post short for many reasons - I two finger type so anything takes forever for me to do, I would rather answer specific questions than take time to type info that no one is interested in (there is a lot of info), and did not want to make a long post no one would take time to read.

Not interested in hearing from naysayers. When I asked the two neuros if anyone ever got better by doing nothing they both said no. I do not consider myself "cured". The disease - at this time - appears to be managed without drugs. My blood markers are still high yet I have no symptoms.

It's like my gout. I have the disease bad. My blood uric acid level is very high and has been for 25 years. However a little bit of magnesium taken every day now keeps me symptom free. I'm not "cured" but I no longer suffer from the disease. I will if I stop taking the magnesium though! Been there done that!

If anyone is interested in more specific information I will do my best to answer all questions on or off forum. Please be patient for responses as I am not on here every day.

I live in Southeast Arizona. If there is anyone on this board in the Sierra Vista, Douglas, Willcox area that would like to meet and talk I'd be glad to do so.

I HAVE NOTHING TO SELL AND NO AGENDA TO PUSH.
I AM NOT SUGGESTING THAT ANYONE STOP THEIR MEDS AND DO WHAT I DID.
I did not create or discover anything. I used information posted on the net that has helped other sufferers of MG in the past.
I merely wish to pass on information that may be helpful to others.

Rob D.