Weight Lost for Myasthenia Gravis

IbaO · June 2011

Hello! I am Iba (ee-bah). Three years ago I was diagnosed with Myasthenia Gravis. I have since went from 130 to 180. Myasthenia gravis (MG) is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Certain muscles such as those that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are often, but not always, involved in the disorder. The muscles that control breathing and neck and limb movements may also be affected. In my case it is all of the muscles named including my arms and legs at times. And because of this it is hard for me to do anything but walk which gets tiresome. I also swim but the next day I become week.
I am 25 yo and have changed all of my habits ie eating, drinking, workout and have yet to lose any weight. I just want to know if someone relates and/or knows someone with MG so that I may become more encouraged about losing weight.

Thank you

gregorysday · July 2011

Greetings Iba. I am Gregory and I too am also living with Myasthenia-Gravis. I was searching on Google for "How do I lose weight with Myasthenia-Gravis" and found your post. I was thrilled to read that I am not the only one fighting this battle. (Coincidentally enough I also have the MyFitnessPal app on my iPhone.)

After my Thymectomy I was on Prednisone for a year the result of which was a weight gain of about 150 pounds. I recently (Yesterday) started counting calories and logging my food intake. I did so once in the past and had great results with it. Additionally, I tried walking every day. The catch though is that you have to burn more than you eat right? I set myself a limit of 2500 calories a day (I am a big guy). In order to burn 2500 calories, I would have to walk for up to 4 hours EVERY day! That is crazy. So I am also looking for ways to shed the pounds.

I think the key really is for us to lower out intake (but not lower than a healthy level) and some how increase our metabolic rate. Normally exercise would do it, but exercise is the one place you and I (and others with MG) are limited. So now what?

Regarding the daily 2500 calorie limit I set for myself. My doctor told me that a very general rule of thumb (no where near exact by any means) is: to maintain a specific weight one must intake ten calories per pound per day. So that means if you want to weigh 180 pounds you should be taking in approx 1800 calories a day. Inversely, if you are 250 pounds, but want to get down to 180, you should decrease your daily intake by about 700 calories. This is of course VERY general and I am certain exercise and the like will make for changes to the formula but this is where I am starting.

P.S. (I love the Picture.)

Your friend,

Gregory

Lotte34 · November 2011

Hi there
It took the Drs nearly 10 years to diagnose me with MG. I have odd symptons in the sense that I dont have much facial weakness, its mainly in my lower body. I too have put on a lot of weight over the last few years and i am finding it hard to find any form of exercise that i can do. Swimming is about my limit. how about you guys?

cicelyjalont · January 2012

I'm Cicely. I'm 17 and I was diagnosed with MG March 21, 2008 when I was in 7th grade. But it had taken 2 years to figure out what was wrong with me. I started showing signs of weakness when I was in 5th grade. I was 120lbs then, and have gained 80+ lbs since then. Any low key excercise tips to start out with ? Thanks

kgranniss · April 2012

Hi, I'm Kendra. I was diagnosed with MG when I was 19. I ballooned from 125 to 160 very quickly. I'm 22 now, and 127 pounds.

I lost the weight by eating right and running. I am always exhausted in the afternoon, so if I'm going to exercise, I MUST get it done in the morning. The first thing I do when I get out of bed is put on my running clothes. If I don't get it done in the morning, it doesn't happen. I lost 40 pounds this way. I've also eliminated animal products from my diet, which I know is a little extreme, but I've heard it can be helpful.

Also, are any of you guys on medicine? I currently take 30 mgs of Mestinon 4 or 5 times a day and, while it doesn't make me 100% percent better, I have much more energy than I would without it.

It's so good to hear I'm not alone in the MG battle!

Kiwijellybean · July 2012

Hi all

I was Googling about other MG things & stumbled across this discussion board.

I would love to hear more about how y'all are getting on? I am having my Thymectomy in November & am also piling on the weight & am limited in how to exercise.

Am looking for tips of how y'all are getting on

kandiadams · August 2012

I was diagnosed with MG in March and have rapidly gained weight since then. 40 pounds to be exact. I have attempted to exercise but experience significant muscle fatigue afterwards. It is great to see that I am not alone in this battle. I currently take Prednisone, Mestinon and Cell Cept. Does anyone else feel like their legs are encased in cement blocks while they walk? I don't experience daily but probably a couple of times a week. I would love to hear from y'all!

ladytinkerbell99 · August 2012

Hi everyone,
I do not have MG, however I do have many friends that are living with it. We talk daily about the struggles they have with weight and other symptoms.

EDesq · August 2012

Greetings Iba. I am Gregory and I too am also living with Myasthenia-Gravis. I was searching on Google for "How do I lose weight with Myasthenia-Gravis" and found your post. I was thrilled to read that I am not the only one fighting this battle. (Coincidentally enough I also have the MyFitnessPal app on my iPhone.)

After my Thymectomy I was on Prednisone for a year the result of which was a weight gain of about 150 pounds. I recently (Yesterday) started counting calories and logging my food intake. I did so once in the past and had great results with it. Additionally, I tried walking every day. The catch though is that you have to burn more than you eat right? I set myself a limit of 2500 calories a day (I am a big guy). In order to burn 2500 calories, I would have to walk for up to 4 hours EVERY day! That is crazy. So I am also looking for ways to shed the pounds.

I think the key really is for us to lower out intake (but not lower than a healthy level) and some how increase our metabolic rate. Normally exercise would do it, but exercise is the one place you and I (and others with MG) are limited. So now what?

Regarding the daily 2500 calorie limit I set for myself. My doctor told me that a very general rule of thumb (no where near exact by any means) is: to maintain a specific weight one must intake ten calories per pound per day. So that means if you want to weigh 180 pounds you should be taking in approx 1800 calories a day. Inversely, if you are 250 pounds, but want to get down to 180, you should decrease your daily intake by about 700 calories. This is of course VERY general and I am certain exercise and the like will make for changes to the formula but this is where I am starting.

P.S. (I love the Picture.)

Your friend,

Gregory

You are TOTALLY WRONG about Weight loss (1) Find out your BMR ( how much you need to eat just to function, w/o any exercise) there is a BMR Calculator on MFP (2) To lose 1 pound per week, eat 500 calories a day less than your BMR, (3) IF you exercise you May subtract those calories or eat them back (all or part). EXAMPLE: If your BMR is 3000 calories per day; you want to lose 2 lbs. per week, drop your calories intake to 2000 cal per day. 1000 cal deficit, 7 days = 7000 cal deficit per week (3500 calories = 1 pound). KEEP coming to MFP, you will "get it."

Also, do you guys know that there are strengthening exercises that can be done in your bed! What about Pilates, Yoga, Stretching OR why do you have do do any exercise more than 3 times per week...3 Times per week, 20 min per day will keep you fit! Don't make wt loss and maintenance hard on yourself! Just begin with the MFP suggestions for wt. loss setting goals, then tweak/customize later.

hdahisariya · December 2012

Hi all,

My husband has MG. currently he is trying to loose weight.
He has lost 12 lbs.
weight loss has stopped now. needs to change again his diet plan.
Eat high protein diet more of soy protein. Cut down your fats completely from food like cheese, oil, butter, salad dressing etc
Eat more of raw /steamed veggies( no potatoes), clear veggie soup, and sprouted beans. Eat law calorie fruits like watermelon, papaya. may not be able to do exercise but can be able to do yoga which is light exercise specially pranayum.
You may want to skip meal using meal replacement shakes or bars.
Definitely you will be successful in shredding some fats.
May God help everyone

jtuman67 · April 2013

Hi,

My name is Jodine, and I'm 36. I was diagnosed with MG when I was 15 and have had a Thymectomy as well. I have been on Prednisone for over 10 years now from dose of 80 mg a day to 15 mg a day. I have gained only 10 lbs in the past few years. From all that I do and have read, the best thing to do is to reduce your sodium intake and increase your potassium intake. This is specifically for avoiding water and weight gain on Prednisone. I find that doing that helps me from feeling bloated and watered down. I do, however, have a moon face and the buffalo hump on my neck from being on the higher doses of the "roids" when I was pregant and post baby. I have found Weight Watchers to be the best method for me to lose weight, but I feel that everyone is different and has to find their own method that works for them to lose weight.

Good to luck to everyone!
Jodine

malak8845 · June 2013

hi everyone im also one with MG and 34 yrs old . I was diagnosed 4 years ago and had it for total of 8 years. I had a thymectomy which was the worse experience of my life. I seen little improvement. i was 120 and after steroids i gained literally 100 pounds. couldnt figure how to lose weight after stopping the prednisone. doctors dont know either since i dont have eating problem. but i been swimming every other day since the day after i am very weak. i have an extreme case of MG. swimming is helping since it is low exertion workout. so i would recommend swimming in an indoor pool so u dont need to climb up and down a ladder. and i have noticed also different climates change how i feel. heat makes it worse for me and i do much better during colder times of the year.

MeRoHa · August 2013

I just started using myfitnesspal. I am a 52 year old woman. I have had Myasthenia Gravis since age 8. I also have Fibromyalgia. and some other health issues not related to weight. All of which make exercising consistently a real challenge. I was recently almost at my highest weight. I have done the yo yo dieting thing my whole life. I am hoping that by using this site to help track my food and exercise and hopefully connecting with others with similar struggles it will help. My favorite exercise is swimming, but I only get to go about one to two times a week. Tai Chi also seems to help.

srtaloo · November 2013

Hello,
I am 36 years old and I was diagnosed with MG in August 2013. I got my thymoma removed a month after being diagnosed and I am now tapering the prednisone 60mg every other day and 35mg the other one (hopefully sooner than later to zero soon)
In 2-3 months I gained 20lb, and now I am using this tool to see how much intake I have, and have a 1300-1500 calories intake, however that is not really working well for me. I am also using fitbit and I realized how much I walk on my average day.
My dr doesnt want me to excersise much since I am always weak. And I am not a morning person to start my exercise routine in the mornings. How are you guys doing it? And what exercise have you decided to do?
I am getting so frustrated with my weight now.

MeRoHa · December 2013

It can be very diffficult getting in enough exercise to burn the calories we need to consume. What I do is try to get in several five or ten minute sessions of something low impact like Tai Chi or dancing (at my own pace). I have had MG for 44 years. Got it at age 8. You will have good days when you have more energy and can mistakenly overdo the exercise on those days. That can cause me problems for many days afterwards. As I started on this current weight loss journey, I started with trying to get at least 15 minutes of exercise a day. I am now up to 60 minutes on most day, but usually break it up into 10, 15 or 20 minute intervals. Water exercise is great if you have access to a pool at a health club or community center.

Weight Lost for Myasthenia Gravis

Replies

Categories