Hi there...Honestly I have never been a good eater and havent changed much..Could never take vitamins etc because I have such a bad stomache...Soooooo my diet has never been good...But since MG have TRIED to at least eat more fruits, veggies, nuts etc for snacks instead of what I LOVE the most cookies , cake etc..ha I do do some gluten free things and never use artificial sweeteners etc but have some bad eating habits! And a few others I wont mention..Ha But I know alot of people on here are following diets that have worked well for them so hopefully they will share with you what they are..Im trying hard myself to do better but with stomache VERY hard so..Guess that wasnt much help for you but I know you will get responses..Just wanted to share my story with ya..Maybe I will learnsome better habits when I read the posts!!! Good luck.....Jacki Im always here for support as is everyone!!!

Hi Tamara,
I come from a long line of celiacs so when I first got sick with vision, GI issues, falling, confusion, I got tested for celiac disease (and MS!). I was negative but tried the diet. Soooo many issues got better (hair stopped falling out, itchy elbows and canker sores gone) that I remain strictly gluten-free and was presumed to be a negative testing celiac.

I was travelling Europe in the spring and noticed less congestion and more energy when eating less dairy. So I did a dairy-free trial and found I was waking up less often with throat stuck closed. I'm in the middle of a sleep diagnosis so didn't want a food allergy to confuse the issue.

I have Sjogren's and hypothyroid disease and an undiagnosed calcium disorder so feel that the autoimmune truck is trying to run me down in multiple ways. So I do eat a lot of veggies, some fruits, eat some organic food, low salt (for high BP hubby) and stay away from artificial sweeteners which give me headaches.

I do eat a square of dark chocolate every day after work which seems to give me enough energy to help make dinner. I told friends I could easily go gluten-free as I never ate much bread but don't take away my chocolate!
Flutebell

Jacki I'm right with you. I eat pretty good, and have actually lost 40 pounds in the last year to try to take some stress off my body. But I can't seem to go totally gluten, salt, or dairy free. I had a salad for dinner, and then a Wendy's frosty ;-)

Flutebell, I think I must be on the same street as you cuz the autoimmune truck has flattened me as we'll.....MG + Hashimoto's Thyroiditis, and I test positive for Lupus but thankfully no serious Lupus symptoms. I suppose I should be more disciplined and see if diet changes will help, but so far I'm kind of a slacker.

Thanks for sharing your stories!

Tamara

Exercise is key and so are our muscles. In MG, we need our muscles to work right. I believe in a high protein diet, have stayed with it and I am back to full strength after three years.

I supplemented protein on my meals that were short and just follow standard little fat, plenty of carbs and protein. Carbs take care of themselves so I focus on the low fat, high protein. Yes I still have my hit fudge sundaes or whatever I want for dessert. I have a beer when I want one. I seem to find that my body is very sensitive to impurities now. Artificial anything bothers me. My diet is mostly organic, to include almost everything one could think of.

We have also replaced chemicals for cleaning using natural soaps and plenty of vinegar.

Exercise, good food and environment will make a difference. This disease can be in our heads, so feeling better can go a long way...

Good luck!

I need to add:

Just to not lose perspective on what I said, this has been only part of my recovery stage. I feel IVIG, Cellcept and wonderful Mestinon has played a major role for me as well. We need to get treatment with this condition, because I I know it can kill us or hurt us beyond repair. This can be a very nasty disease and can vary greatly in severity. We just never know until we know and hopefully limit it somehow.

Whatever you are taking, BELIEVE IT WILL WORK. This in itself can make a difference.

Best wishes for peace,
TJ

TJ,

Thanks for sharing your thoughts, and especially for the reminder that we have to take care of not just our body, but also what's going on in our head! That component seems all too easily forgotten in the swirl of ever changing MG symptoms that can keep us so body focused.

What exercise has been working for you? Other than walking, I haven't found a lot I can do. I've been thinking that a gentle, therapeutic type of yoga class could help a lot, but haven't found a class like that yet.

Tamara

Hi again I also believe exercise, as much as we can do is great way to help.....I find I can only do the walking myself but know after I do it I sure feel better....Cant do everyday but try at least 4 times a week...As far as yoga I tried and was way to strenuous for me but you are right there are low impact classes also..let me know how it goes if you try that...I also have been trying to get into a class they offer at our local Boces center that shows you low impact exercises for stress and breathing etc....Sounds great but they never seem to get enough people to join so cancel it but Ill keep trying....let me know if you find something interesting....Jacki

I've been doing Taoist Tai Chi for four years, throughout the getting worse, and now, getting better stages of my MG diagnosis. It is gentle, weight bearing and there is even a sitting down set of moves to keep active when not up to standing. My ability to do Tai Chi is very diagnostic of my health. My instructor came over on the first time with Mestinon on board and said "You didn't have to sit down to rest! What is happening? Your balance and strength is so much better!"

I swear that Tai Chi kept me alive while doctors kept saying it was all in my head. It builds good thigh muscles (from danyus that are like deep knee bends) that will be very useful if I ever have a crisis.
Flutebell

I feel nasty right now
I felt great when I only ate veggies, fruit and protein ( no beef).
I think the better we take care of ourselves the less symptoms we have....at least that is how it is for me.

Thanks all for the input and advice. It helps a lot just to hear your stories. I think I'm a little hard on myself sometimes, always thinking I should eat better and move more.....but hearing from you all reminds me that it's a journey for each of us, and we're all just doing the best we can.

Tamara
How did you loose 40 lb
I lost 20 and haven't lost anymore in 2 years

Tamara
How did you loose 40 lb
I lost 20 and haven't lost anymore in 2 years

I do pushups. When I first started the recovery process, I could do none. I am easily over 30 now.

Make sure you exercise when you are at your strongest. Set small goals and expand from there. I could only do one lap walking to start. Now I can play multiple games of basketball again.

So humbling.