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.

Wonderful news!

I am open to hear of ways to help my MG!

This post came at a perfect moment when I came to the conclusion that Magnesium supplements help my MG. What perfect timing! It was just this morning when I was reviewing my MG journal, that I decided Magnesium helps greatly.

I was taking Magnesium twice a week, specifically "Amino Acid Chelated Magnesium - 100 mg" for a few months and I had improvement of my MG and had to cut back on my Mestinon since I started to get overdose symptoms. It took about 6 weeks for the Magnesium to start working. (I posted on here when I had these overdose symptoms, I was very worried and thought my MG was getting worse or I was developing some other health issue)

Just to be sure, I stopped the Magnesium, and my MG returned to "normal" and I had to increase my Mestinon back to the previous dose.

So I started the Magnesium again last week and today I am starting again to feel much better...and today I am feeling a little bit of a Mestinon overdose so I am going to take less Mestinon. And I am going to increase the Magnesium slowly until I am taking one every day.

Before I tried Magnesium I read a great post on this site by one of the moderators (Thanks mrsD!) about Magnesium and I felt hopeful.

http://neurotalk.psychcentral.com/showthread.php?t=1138

If anyone wants to take Magnesium please be careful since it is on the list of things to be cautious with if you have MG. I am going to look for that post about Magnesium. I did a lot of research before I decided to take Magnesium

This experience makes me feel hopeful that there are other things to do to help.

Rob, I want to hear more.

I know there is no cure for MG, but it does seem like a change of diet/habits can make MG much much easier to live with, with a chance for a symptom free life. Just that chance of feeling a little better is enough for me to change my lifestyle and eat differently, much preferred by me over drugs if it is possible.

Nice to meet you.

I am glad to see some of you have improvements with magnesium.

If you keep to 1/2 the daily requirement, about 200mg elemental, from a good source (not oxide type) you will still be within the RDA. Magnesium is needed for many many biochemical systems, and we just cannot live without it.

You can choose foods that are good sources, if you rather go that route.

www.nutritiondata.com has a good database on foods, and what they contain.

But 3 oz of unsalted almonds will give you 270mg! I have some other food suggestions on my magnesium thread:

http://neurotalk.psychcentral.com/thread1138.html

Steroids deplete this mineral, and so do diuretics including caffeine.

DesertFlower -

You have a PM. Stay in touch please but remember to be patient for my responses. I still have to work for a living (bummer!) and won't always be on here everyday. Hope we can meet sometime.

Rob D.

Rob,

Your path is of interest to me as well ~ when time permits can you post more or send me a PM as well? As a new member I am unable to initiate the PM feature.

Hi Kachina-

Yeah, I don't seem to be able to PM you either at this time. I haven't checked but I guess there are restrictions on some things for new members? Do you have to have a certain number of posts before the PM option kicks in? Or something else?

Some of what I'm passing on contains links and I found out last year that the mod/owner frowns on posting links. I could tell because she cut them out of my post! So I really need to PM or email you.

So either post a hello to everybody one at a time until you get enough posts for your PM priviledge to kick in or post your email. I'll get back to you either way

Rob D.

Good Morning,

I read with great interest your post. I have always tended towards natural healing/holistic health, so I am very intrigued by what you have learned. Any information you may want to share with me, I will greatly appreciate. I have not logged on in a long time, but was diagnosed with MG in August 07 and had a thymectomy in Jan 08. I have improved significantly, but of course still not "normal". Thanks for your help.

My email is*edit*
Thanks again,
Dorothy

Could you clarify a little here? Did you have a Myasthenia panel in the beginning and then again after being symptom free for a period of time? Were there any changes in the results?

Hi Kachina-

First panel was in July of 2009. I have been symptom free since December of 2009. My second panel was done at the end of May 2010. The results were essentially the same. So the little critters are still floating around but not affecting me. That's why I said I don't consider myself cured.

For all I know I may have had high numbers most or all my life, and that some change allowed them to run amok for a while. It's not as if this panel is done as part of any standard blood testing. There may be all kinds of folks out there with high numbers and doing just fine. Since not all MG sufferers are serum positive it may be entirely possible that not all serum positives are going to get the disease.

I have gout. I have very high blood levels of uric acid. I no longer have gout attacks even though my uric acid level is always high. A little bit of magnesium every day keeps me symptom free. Point is that a high uric level does not guarantee suffering. My PCP tells me that there are gout sufferers who have blood uric acid levels way down in the normal range. There is not always a direct correlation. Might be the same with MG and possibly other diseases.

Besides, he told me "We don't treat the numbers, we treat the patient. And right now you don't need any treatment".

Kachina!!!! --You did it to me again! I could have answered your two questions in the following manner-

Ques#1 -- Yes
Ques#2 -- No

You sure are sneaky in how you make me peck all those words every time

Rob D

During your research did you find the information about DMSO being used to reduce abnormal antibodies present in MG?