Hey,

Have any of you guys heard anything about Manganese being helpful for MG? I keep reading so many things on this ?mineral? (don't know what manganese is classified as lol) for Myasthenia Gravis. I even read some things saying that Docs. used to use this as a treatment for MG before Mestinon was available...I read that in some patients, it actually even shrunk a thymoma...

I'd be really interested to know if it has helped anyone!

Thanks!

I really like yogurt and just noticed on the package that it is "a good source of magnesium". Do you think that I should avoid it?

I think that eating foods with Magnesium is safe; I think that as you eat foods that are well-balanced with other minerals that work together with magnesium, the MG body can handle it; it's only when the food is not 'balanced,' like what someone mentioned re. bananas (excessive magnesium/potassium,') that it might not be 'safe.'

I think I"m going to see a nutritionist! lol

FYI...I read that during world wars, there were 'outbreaks,' or clusters of MG cases...I think researches postulate that it was due to malnutrition-food for thought as the cause! I honestly think that proper nutrition, or lack thereof, plays a big role in acquiring MG...

I think so also.
I was a vegetarian for over 3 years. I didn't eat much, take care of myself, or suppliment with vitamins.
One of my first cousins had MG for five years, taking mestinon daily the entire time. Prior to him getting it he wasn't taking care of himself, eating, etc. He started eating clean, healthy foods, and doing detoxes. He didn't have his thymus removed and it "went away" (which my Neurologist said was impossible without getting your thymus removed). He now works hanging drywall doing very physical labour. He still isn't sure if he is in remission or what, but the Doctors told him on one of his last visits that he couldn't have ever even had it.
Food for thought indeed!

Hey Kristy,

What were your cousin's main areas of weakness?

I also was not eating properly prior to getting MG. I lived in an apartment infested with 'creatures' (mice, roaches, other vermon) for a year (I had a lease and tried to get out of it many times, but my application for it to be cancelled got lost in the paper shuffle). Anyway, I barely ever ate at home out of shear disgust...Anyway, I lost a lot of weight and then my health problems got much worse, mainly in the form of getting a lot of infections and now MG with a thymoma. I also smoke, which doesn't help at all, I know... I'm pretty sure that my poor diet has had a lot to do with my current health situation.

The fact that MG can occur in clusters, mainly when malnourishment is occuring on a large scale, I think shows that the immune system probably stops working properly when it's not properly nourished. I have also come across a lot of other studies that seem to imply that autoimmune diseases occur more often in people who are lower on the socio-economic scale...Nutritious food, time-consuming to prepare and oftentimes, more expensive than 'junk,' is taking a backseat to more affordable meals.

One other thing, I read that people taking statins are at a higher risk of acquiring MG. Statins can lower cholesterol to dangerous levels and also depletes the body of Coenzyme Q-10. While I've never taken statins, I do have very low cholesterol for some reason (most likely the poor diet).

My sister is more concerned with being skinny then healthy she has diahrea all the time and does nothing about ot she eats tons of grapefruits, fruits and veggies and her mg seems like its getting worse but she is crazed about being skinny

I love my skittles....I crave sugar!!! I am in hospital right now....finally got my new laptop setup! My sweet hubby has brought me skittles, peanut mm's, reece pieces, and powered donuts! The IV steroids are giving me the major munches!!!

Steph

HEy hon!

I crave suger like mad now that I'm on pred! It was either Becky or Annie that told me pred can induce diabetes, so I have my blood suger checked often and it is just fine, but I drink sweet tea like it is going out of style......of course, being from the south, you know how that is!

I also CRAVE frosting straight from the can - how gross is that?

How are the IV steroids treating you? Are you feeling stronger? I bet you love your new laptop!

Big hugs!
Erin

iI was diagnosed with mg 3 years ago in july - i am on a large dose of mestinon 90 mg 4x's a day and 180mg long acting at bedtime . I have also had plasmapheresis for months which really did not work that well for me - as fast as my plasma was being replaced - was as fast as the mg levels came back. then they tried ivig which has helped me for the past year - my insurance company changed from united hc to aetna and aetna does not cover this because they feel that ivig is experimental in mg - this helped me so much - i was having ivig every 8 weeks for 2 days - i was even able to work p/t as a triage ob/gyn nurse again - my worse symptom is severe diarreah which i know is a side effect from mestinon - it is sometimes uncontrollable - i do take over the counter meds for this but sometimes it does not matter . i eat at least 2 bannanas a day - my mg when first diagnosed put me in iciu due to not being able to swallow and talk - the mestinon has helped greatly - i dont think without this medication i would be able to function - my eyes twitch and droop and most of the time if i take a picture even if i smile i look sad - i also have a big problem with my upper arms - it feels like lead to pick up my arms to blow my hair - and there are times that after i work i could sleep for days

can someone help me with what foods to eat - my neuro only told me to eat healthy - fruits, vegetables, fish etc - i have a severe problem with diarreah
i take mestinon 90mg 4x's a day and 180mg long acting at bedtime - any help would be great