Teresa,

Thank you for the info!

The only medication I take is Mestinon, and I've never taken steroids. It is a little odd that eating more fatty foods is helpful for diabetes, but at the same time it does make sense. I don't eat very much meat, mostly because it is so expensive to buy meat that doesn't have antibiotics or chemicals added. Maybe I should try eating more meat, it is one of the few things I have no allergy to. I do eat a lot of healthy oils such as olive oil and butter.

I don't drink soda at all, it gives me an immediate bladder or even kidney infection, don't know why but I avoid the stuff, even one swallow of it gives me pain.

And all those artificial sweeteners I avoid...every once in a while I do have a piece of gum but I've been trying to avoid that, too, because they aggrivate my MG symptoms.

I am going to go completely gluten free, I don't know why I keep doubting myself and trying gluten containing foods again. It is interesting to note that a gluten free diet can help diabetes.

The Mestinon is driving me crazy...my family is even starting to ask me if I recently took Mestinon if I do something odd. It makes me feel bad when they ask that question after I express an emotion, such as feeling sad or angry, as if my emotions are not real, but Mestinon induced. The Mestinon makes me really emotional, paranoid and even suspicious....when I can, I avoid people for a few hours afterward.

I am considering asking my Neurologist if I can lower my Mestinon dose even further. I have found that with diet changes I have gotten my symptoms more stable, and would like to see if I could go Mestinon free even if it means being weak. To be honest, these emotional problems are a bigger issue for me right now than the weakness. Of course, I don't want to be bedriddden again, that was no fun not being able to move at all...but I'd like to feel sane again, too. I wonder if it is possible for MG to get stable enough to stop taking Mestinon...

Thank you!

Well, that soda sucks calcium right out of the bones and leads to kidney stones. Kidney stones can easily cause a kidney or bladder infection. Do you drink enough water? When was the last time you had a UA?

I honestly don't think it's the Mestinon but the Mestinon revealing something else. It could be the drug but don't rule out other medical conditions.

Do you eat things like sunflower seeds or beans? Seeds, nuts and beans are great sources of protein, as are things like quinoa. You need those amino acids, fiber, good protein and omega 3's. Also, foods like avacados and peanuts (are you allergic?) can help with balancing any blood sugar issues. Avacados are high in potassium, so be cautious. Too much potassium and MG don't mix.

Maybe you should see a nutritionist.

Annie

And not to scare you - or anyone else - but have you seen any chemtrails overhead?

http://theintelhub.com/2011/03/30/se...-like-roaches/

Or could it be fluoride toxicity?

http://emedicine.medscape.com/articl...overview#a0104

Fluoride is now put in almost anything and is toxic. It is not meant to be ingested. I have no idea if it's in Mestinon Syrup or Tablets. It's not listed but that doesn't mean it isn't in there!!!

Susan,
You live in Arizona, right?

Google 'radon in Arizona'. You will find plenty of info.

Radon contamination has become an issue is different parts of the country - for cellars of homes, water supply, farming, etc. Some folks are extremely sensitive and swear that it negatively impacts their daily lives. Cross check some of the symptoms with what you have been experiencing and see what you think.

One other thought. If you are applying for SSDI, you may not want your doc to officially decrease your medication at this time.

Annie,

I haven't had a UA for a while (since about 2004), haven't had any trouble for years since I stopped drinking soda and have had no need for a test.

I do drink plenty of water now, but before I got MG I didn't, this probably contributed to the soda problem. I still have the effect because every once in a while I take a sip of something bubbly, and I get pains in my back where my kidneys are.

I eat lots of beans since I am not allergic to them, probably eat them about every 2nd or 3rd day. I love nuts but if any allergy kicks in I have to avoid nuts or I get an allergic reaction to them too, including sunflower seeds. I eat quinoa, chia seeds and amaranth with no problem so I am increasing the amounts I eat of these foods. I love avecados and do eat them every few weeks, no allergy and they make me feel good, too. Peanuts seem okay as long as I get organic peanuts...sometimes regular peanuts give me a slight allergic reaction.

I'd like to go to a nutritionist, I've had it on my list of things to do for a while, just never have the energy to look into it and make an appointment...I think it is a great idea....I wish someone would make appointments for me.

As for those chemtrails, they worry me, but I don't talk about it much because it is a controversial topic. I do know that my first MG symptoms started shortly after I drove by a cotton field that had just been sprayed from a low flying airplane, maybe a few weeks later but I can't remember now. I felt awful afterwards and took allergy medicine and was still taking it when MG developed. I've looked up some of the information about the chemicals being sprayed into the sky, pretty scary, and often wonder if it contributes to all the autoimmune disorders.

As I talk about my MG more and more openly, I'm finding that everyone I know, knows somebody with an autoimmune disorder...seems AI disorders are extremely widespread these days. I wonder if there is a relationship between the geoengineering projects that spray chemicals in the sky and AI disorders...

Fluoride...I've stopped using fluoride in my toothpast, probably about 6 months ago, and I think it makes me feel better. I do know my gums in my mouth are doing better without the fluoride. I decided one less exposure to a poison may help my MG symptoms...but I do know fluoride is everywhere, so hard to avoid. Fluoride is not added to the water here but it is present at low levels.

Something else I noticed today, when I decided to skip breakfast, and then I skipped lunch too (this is not a normal thing for me), is that I felt better. I drank water only during the this time. When I ate an early dinner I didn't have any reaction that I have been having to food or Mestinon. I'm going to try this again unless I am really hungry, to see if this effect is repeatable. I also didn't take Mestinon until later with food, I was strong enough that I didn't need it until in the afternoon. Maybe I need to fast once in a while...it seems like I noticed an effect on fasting with reduced MG symptoms a while ago but can't remember clearly.

Sue, radon? There is radon around here...I live in a house that is poorly insulated and there is lots of air flow, in fact I open the windows most of the time and don't have a basement, so this is unlikely, but I guess you never know. Been a long time, many years since this house has been tested for radon. And you are right about the Mestinon dose and SSD, probably not a good time to ask...I probably won't get SSD because my symptoms are tolerable at the moment...I do wish they would be consistant so I can figure out how to live my life...

Thank you!

Not to be controversial either . . . watch this.

http://www.youtube.com/watch?v=bgdLDtiFXNo

Anything that effects our health is worth knowing about. Those comments on top are based on facts. To further disturb you, those aluminum nanoparticles get into your body and stay there. They also spray barium. Nanoparticles are EMF receptors and transmitters. In other words, nanoparticles can amp up the EMF signal coming into your body. For example, via cell phones, computers, HAARP array in Alaska, etc. They have done studies that show what this does is to cause DNA damage. I have more info but it makes me want to puke to even think about it.

Look up Zeolite.

Sunflowers are not nuts/legumes. They are seeds. They're in the same food family as the dahlia and the jerusalem artichoke. Maybe you need allergy testing again.

Annie

Food allergies
 

Food intolerances are notoriously difficult to test for, although testing is done. When I was practicing pediatrics we referred to the big five, milk, wheat corn, chocolate, and eggs. In my practice it was overwhelmingly milk and corn. I started with the child's favorite food, or anything they had cravings for, because that was usually the offender (sadly). They were to go five days in a row without it (often took longer because these ingredients turn up in lots of things and it's harder for a child to control diet), then eat everything they had been missing with that ingredient. If we were right, the effects were striking if not always the same, and there was no problem keeping the child on the diet. As they grew older they seemed to be able to tolerate these foods better, but when stressed by illness or other allergens, they needed to come off again. I actually had one little girl who refused to take the challenge because she felt so much better off milk. (True food allergies like nuts and shellfish are life threatening, not something to mess around with.) I suspect the big five are true for adults as well and a good place start. It avoids the need for fasting, which does make people feel better, but confuses the picture in the long run and we need good nutrition with this disease. Good luck with checking these things out, if real, it makes a world of difference in how you feel. nc

I think that many times it is not only a matter of what you ingest, or are exposed to, but how much.

For instance almonds contain cyanide which is a lethal poison, but you can safely eat almonds. This is because it is a very small amount.

water is not considered a dangerous substance, but you can die from drinking abnormal amounts of it, because it will lead to significant alteration in your electrolyte balance.

It also depends on what the food does-if it affects a metabolic pathway, or activates the immune system and how.

For instance, patients with celiac can not be exposed to even a very small amount of gluten, whereas patients with milk intolerance can have a small amount of milk containing products with no ill effects.

I just returned from a 5 wk hiatus/vacation. We only have limited brief internet at a free wifi at our laundromat.

I find this post very interesting. The first thing I thought of was
dumping syndrome.

http://www.mayoclinic.com/health/dum...ndrome/DS00715

This happens when motility of the GI tract is upset and overstimulated. Mestinon certainly can do that. Anyone can have dumping syndrome (not just bariatric patients).

Good thought, Mrs. D. I just wanted to augment what she said about dumping syndrome. Mestinon can cause a sudden increase in peristalsis and, therefore, dump food you just ate into the small intestine before it gets a chance to be digested well first in the stomach. Since many of you eat with Mestinon to reduce some of it's side effects, that's a possibility. I had dumping syndrome from a lack of acetylcholine but recovered after I started taking Betaine HCL with my meals. No, I don't recommend you try that! Too much stomach acid isn't good either.

A compromise would be to only have the dose of Mestinon with a moderate or small meal (not a large one)...one with low sugar low carb, and some fat.

Fatty meals reduce dumping. Sugar and carb content promote it. Large meals are OUT for people with this reaction, to the drug, or who have dumping connected to other medical reasons.