Originally Posted by pjlla

Needananswer....

I sounded very much like you about 5 years ago. I was diagnosed with MG about 10-12 years ago.. I tried a lot of things and nothing seemed to help. The adjective thin was never used to describe me, but after coming down with MG which caused a reduction in activities I really got heavier. It was a vicious cycle. Now I did try dieting with Atkins and lost some weight, I also tried some supplements also and again overll I was a bit better, but by and large it was negligible. Then after a while, I gave up dieting and gained my weight and I was worse... Then about 2 years ago I had a bad accident. I was cleaning my gutters and the ladder I was on slipped on the deck and it slid away from house. It was kind of like those bugs bunny cartoons where the ladder fell away and then I started to fall right into the ladder. I broke my face (lower jaw, upper jaw, pallette, cheek, eye socket, 5" fracture of skull, destroyed a sinus cavity, had blood leaking into my skull and spinal fluid leaking out.. Then I fell off the ladder onto the deck and did a dbl compound fracture of my right arm.. I was in ICU for a week and in a regular hostpital room for a couple more days, then a rehab hospital for a week. When I was in my hospital room they wanted me to get out of bed I walked to the chair and thought I wouldn't make it. i then got up from chair and walked to bathroom. Then I walked back to chair. These short walks took everything out of me. I realized at that moment i've got to do something. Well, I have a sister who is very very healthy and into eating proper nutrition. Well, I ignored her in the past, but thank god, she was there to help me recover. When I was in rehab hospital, she brought a juicer and fed me juices. (The rehab hospital idea was to serve me stuff like mac and cheese and blend it up since my jaw was wired shut). I couldn't even eat apple sauce with it getting caught in my teeth.

Anyways, after 6 weeks and finally being able to eat solid food, I decided to stay eating healthier. I am on a low carb diet. I eat hardly anything processed, if any. I eat nuts, vegetables (low carb) and some fruits (mostly berries and other low carb fruit). I do eat lots of protein such as in nuts and meats. I also eat lots of fiber (flax meal, hemp protein etc). As far as supplements, I take a ton of them, name a letter, I'm taking that vitamin. I take fish oil, borage oil, flax oil. Also lots of other supplements to reduce inflammation. I used to do IVIG to stregthen me, but I haven't had an IVIG in almost 2 years the last one I had was while still recovering at home after my accident. Since then, I haven't had the need of it.

In short I'm trying to say, I get it and not wanting advice. i tried a lot of things and they didn't work. Then, I tried more of what I did before, more supplements, more vitamins, more exercise, better eating. (Real low carbs) etc. Finally it worked.

So, I realize I may be just like the people you are frustrated with. But I also hope you take this and know maybe you'll be lucky like me and changes to our diet etc can help you.

If you folks want, I'll post the supplements I take daily...

One last thing in full disclosure. .I had been taking cellcept for at least 8 years. And, I still am taking cellcept. However, on the last visit to the dr (about 3 months ago). I asked if I could decrease the amount I take and hopefully not take it anymore. He wasn't crazy about the idea. But, he did say if I continue to stay in my current health, he will lower my medication after my next visit (July next year).

Good luck all