I was wondering if anyone has had a large weight loss. I have lost almost 30 pounds since early December. I take 200mg of Imuran, 3x60mg of Mestinon and 180mg time release Mestinon at night. I also get IVIG a couple times a month. I have discussed this with my GP (internal medicine), my Gastro and my Neuro and none have an answer.

I have very little appetite and pretty nauseous in the evening. I am 5’11 and now weigh 147 pounds. At the end of November I weighed about 175.
Thanks
Mike

I had a huge weight gain and lost all of it plus another 10 pounds. it was like 35 on then 45 off...I kinda feel like its the mestinon messing with my appetite because i never wanna eat

Mike, Figures . . . you guys always have trouble with weight loss while we women usually never do.

It's not only the weight loss but the nutrition loss! Since your primary doctor was useless, why not ask for a referral to a nutritionist? There are probably many things they can do for you. Protein shakes might help. Peppermint has been known to help an upset stomach. I know that Imuran can cause nausea.

You have to eat though! Not only does the body feed off of itself if you aren't eating enough but it can cause damage to many systems in the body, including the heart. You know how people who are anorexic have so many physical problems? Same diff.

Whey Factors has good protein shakes and they are delicious too! Just combine with milk or rice milk. You can thicken them too, in case swallowing is an issue.

http://www.iherb.com/Natural-Factors...40-g/6691?at=0

What vitamins are you taking? No, I don't think vitamins will make your MG all better. HOWEVER, your body needs nutrients to stay healthy. Having chewable vitamins, even children's, can really help. I simply take more of them to get an adult dose.

There have to be new, inventive ways to get you to eat! Seriously, nutritionists are experts at this stuff. It really helps to talk it over. So, what food do you LIKE to eat? Just get those and pig out earlier in the day when you aren't as nauseated. Maybe there's a way to shift when you take your meds. I'm just tossing ideas out there. I don't think anyone should have to suffer!

I hope you get back to your "fighting weight" soon.


Annie

Thanks Annie I like the idea of seeing a nutritionist. I take a multivitamin once a day. I can eat bland foods and sweets. I eat a lot of fresh fruits (peaches, bananas). My wife thinks it’s my gall bladder but I suspect the Imuran. I have a great fear of being put under for gall bladder removal. My mom died when they put her under for a operation. She had just been dx’ed with MG and we couldn’t get her off the respirator. I am going to get my wife to get me an appointment with a nutritionist today. This is a catch 22 my MG makes me weak then the lack of proper nutrition compounds the problem.
I tried the Ensure but it had a horrible taste. I guess I need to try some of the others and maybe add something to improve the flavors. I know my strength is going away pretty fast and find myself resting and napping a lot more the last couple of months.
Mike

Have you seen the ingredient list of Ensure?!!! It's like ten inches long.

Seriously, the Whey Factors stuff is simple and tastes good. Amino acids are some of the building blocks of the body and are essential to good health. You can always add fruit like bananas if you need to. You have to be very careful not to get too much potassium or magnesium though. Have they done a baseline of your electrolytes at some point?

I hope you figure out something that works for you.

Annie

I lost more than half of me before I got everything under control. Ensure isn't too bad if you go 1/2 & 1/2 with milk. Beer in moderation is great for pure calorie intake to keep your body from consuming itself as long as you can handle it (lots of MG suffers cannot.)

I am now drinking Top Care, the taste is not as bad as Ensure. As for beer I don't like the taste.
Did you ever find the cause of the weight loss?
Thanks
Mike

My weightloss was because of the MG - the muscles in my jaw & esophagus were severely effected when I first developed the condition. I just couldn't swallow very well and became fatigued chewing. Eventually, the stomach shrinks and you get filled up really quick making it even harder to get nutrition into you.

Ensure, Nestle powdered breakfast and one other that I cannot think of off the top of my head were consumed in large quantities... the Nestle powdered breakfast is not bad tasting actually but any of those shake meal replacements gets pretty gross if that's all you're getting into you.

Yeah im with brandon- when i was very bad last winter I couldnt eat or swallow so i just didnt have any appetite..thats why i lost all the weight but love eating now...sorry you cant mike.

whey protein like annie said works wonders..i drink it everyday

In the beginning with MG I lost weight because I was too weak to eat very much, but have gained it back now.

I take only Mestinon.

My problem is that I am hungry all the time and I think it is the Mestinon, the food goes through me so quickly I wonder if I am digesting it properly...I can hardly make myself chew the food sometimes, partly because I chew so slow now with the MG, my hunger doesn't have the patience to wait for chewing.

I haven't gained extra weight however even though I eat much more than I did before MG.

Peppermint tea really does help stomache troubles, as AnnieB said. Ginger/peppermint tea helps even more than Peppermint alone, from my experience. I've been drinking it recently because it helps my digestive system a little, seems to help slow down my digestive system so the Mestinon doesn't bother me quite as much.

I wish you well, Mike.