Hi there.


My name is Samantha, I'm 23 and I was diagnosed with MG in 2011. :/ For a quick recap on my course with this: I was placed on Prednisone and Mestinon, had my first MG crisis (with breathing) in summer 2012, had a thymectomy in summer 2013, had a second crisis (this time with swallowing) in december 2013. I'm doing okay now, as I generally am, but have noticed that my speech has declined more over the last week so my neurologist got me cleared for an outpatient IVIG this coming Monday...

I'm just curious about a few things now. I have tried to do my own research regarding MG, it's potential causes, alternative treatment etc. It's hard to do it all on your own and my neurologist refuses to look into any of this - - his bedside manners are okay at best. I do try to see a homeopathic MD and she promotes exercising and basically a gluten free diet but it's hard to get to the gym with the busy schedule and it's so expensive to eat healthy! So frustrating.

I guess I'm hoping to meet fellow peers who struggle like I do and who know what it's like. I haven't met anyone who has what I have. My days consist of work and school and by the time the day is done, I'm pooped and have to try to get 8hrs of sleep every night; otherwise this semester would be the death of me. :/

Anyways, I've read that potential causes could be:

a) lack of proper nutrition: This could attribute and the body just may not be able to break down certain complex sugars and things in the body. Which would be why a gluten/wheat free diet would be best. The few times I've been able to pull this off, I have noticed feeling a bit better. Like, I KNOW, that soda has adverse effects on me b/c every time I drink it, my symptoms are worse for the next 24hrs; same with coffee. So I stopped drinking both. Does anyone else notice this? Do you notice any relation to what you eat and how it makes you feel? I'm trying to start a journal to keep track.

b) IgA deficient: I've also found that the condition could be related to being deficient in certain antibodies, most likely the IgA antibody. The IViG supplies the IgG antibody and a smaller amount of the IgA. I need to do more research about IgA deficiency but it is a Primary Immunodeficiency Disease and research has shown a potential link between the two. It's just hard finding much in depth, trustworthy research! What have you guys heard?

c) Candida Yeast Overgrowth: I actually came across this in another post earlier this afternoon and I feel like I've come across this before. Any thoughts?

It seems like there could be many explanations but I wonder if that is possible because it IS the "snowflake" disease after all; it shows in all of us differently right?

How would you guys say you manage your MG? Like through what supplements/diets/exercise plans/ etc etc. Has anyone else had a thymectomy and how do you feel it helped you??

I apologize for all the questions. I'm just bursting with them and would love to see what other research or tips everyone has. I hope that we can all help one another with our research and in taking the initiative to better our health. From what I have experienced, the docs will not do it for you. At least, mine won't. I'm too young to let this disease win me over and I'm tired of fearing about declining and getting worse when I'm only 23. It's too scary.

So I must continue branching out. I hope to have many great discussions! <3