myasthenia and loosing weight - can it be done?
 

HI,

I have myasthenia gravis and i have gained a ton of weight (almost a 100 pounds in the past 2 years). I am not on prednisone but i still struggle b/c prior to myasthenia (started at age 16) i was very thin and then as the disease generalized (at about age 22) i started picking up the weight rapidly b/c i had to give up the 7 sports i was involved with and i associated food with energy but the food i would eat failed to give me the energy i needed to compensate for the myasthenia (which i was only diagnosed with during the past year). It has gotten to the point where i can't really ride my bike any more partially b/c of the weight and partially b/c of the fatigue and doubble vision. i have very little outlit for exercising (other than walking) and I'm wanting to get back into bike riding but I'm not sure how to progress up to that level (i used to ride 5+ miles per day before the disease generalized). I am trying to change my eating habbits now but i'm finding that i need to add exercise. however, the myastenia has generalized to the point that if i'm not careful my legs will collapse beneath me. i know there is a weight loss forum, but i wanted to start here b/c the weight gain is mostly related to the rapid degegredation of my energy levles. i know it is a self perpetuating cycle at this point but I don't know how to break the cycle at this point!

Any suggestions would be greatly appreciated!
:)

Hi again,

I'm just about to start going back to my physiotherapist, and we will hopefully start a programme to help me to lose weight, I'll let you know how that goes. I also see a dietician, which has helped me greatly. Im lucky as seeing these 2 people does not cost me a thing.

Hmmmm, I've not had any wt problems, even with steroids.

I haven't had any troubles with mine, I lost 60 pounds in 3 weeks before I was diagnosed and now I can't get it back.

I can relate
 

Hi - Yes - I have also experienced weight gain. I was diagnosed last March. However, 5 months before diagnosis, I has a complete hysterectomy. I have been taking HRT, mestinon, and recently prednisone was added to my list of meds. I have gained about 25-30 pounds (I no longer keep track!!!) I guess I believed it was more related to the surgery & HRT then the MG. But, like you said, the decrease in energy is a factor too. I wish you good luck & I will be thinking of you. It is hard enough having to deal w/ all the sudden & drastic changes & effects of MG. I can understand the weight thing- Let me know how you are doing. I wish I was more helpful, but I hope by me sharing my struggles can help, just to let you know that someone out there gets it. This has sure helped me!!![/I]

Nancy Lee

I'm myasthenic since last June and lost up to 7 kg (1.80 m tall and 78.5 kg before) maily due to chewing and swallowing difficulties.
I started taking pred last August ( up to 75 mg/day) and my nutritionist set my main objective to halt the weight loss…eat less but more often and more caloric food…reduce salt and sugar but increase dairy, fruit and potassium products.
So far, it worked fine, I'm stabilized at 76 kg.
Maurice.

This is my typical food ration:
Breakfast: 1 glass of light craneberry juice, 60 g of cereals( the least sugar containing possible), 150 ml of whole milk, 6 raspberries, 1 kiwi, 1 mug of chocolate.
lunch: 1 glass of wine, meat or fish (3x/week), vegetables, 1 light dairy product, 1 fruit, 10 g of chocolate.
afternoon: 1 banana, 1 dairy product, 1 cookie, 1 slice of cheese.
supper: 1 serving of soup, 4 small slices of buttered bread with paté, cheese or smoked salmon, 1 light dairy product and 1 fruit (usually 10 grains of grape fruit).
My potassium and sugar were tested last week and were OK.
Bon appétit,
Maurice.

I forgot to mention that I add 1 tablespoon of almond or hazelnut powder to my morning serving of cereals…
Maurice.

Sorry about the messy information about my food, I should have thought twice about it before postering it…
At lunchtime, 2x a week, spaghetti or lasagne with home made bolognese meat sauce, and for supper, also twice a week, 1 (sometimes 2) egg with the 4 slices of bread.
Maurice.

[QUOTE=neutro;190485]
My potassium and sugar were tested last week and were OK.
QUOTE]

Do others have their potassium levels checked regularly? I get bloods done often because of Azathioprine, but they usually don't monitor my potassium. On my most recent blood test they happened to check it and the levels were a bit below normal which is crazy because I eat about three bananas a day! Is there a link b/w MG and potassium?

Regarding weight gain - I did gain a tiny bit after diagnosis, nothing significant though, went up to a Canadian size 12. I lost that weight (Mom and I went to weight watchers before I got married) and got back down to about an 8. I've since started pred and now I'm probably about a 14 - maybe I could still squish into a generous 12! My face has really swollen over the past month or so though - very annoying!

Taking pred reduces the level of potassium.
I think you should also reduce the amount of salt and sugar in your food and increase the amount of calcium.
See http://www.neuro.wustl.edu/neuromusc...mgrx.html#pred
for possible effects of MG medications.
Maurice.

Hi Scots Kat,

My last 2 blood tests showed low potassium levels.
Im now taking a supplement, as well as eating foods high in potassium.
I will be interested to see what the next blood test results show.

weight gain
 

Hi
I also have myasthenia gravis. I was diagnosed when I was 16, I am 25 now. Currently on disability. I used to play sports in High school and before I was diagnosed. I had lost over 50 pounds. I was able to continue playing sports after alot of tests, battles with alot of DRs and I had a Thymectomy in Dec 1999. I was diagnosed in Oct of 1999. So it happened pretty fast after I was diagnosed. I had alot of good days and bad days like most I am sure. I felt pretty alone with no one really understanding where I was coming from. I still feel that way. I have a very good support team thank goodness. So now I am on disability unable to work as of now. i am currently seeing a new dr and taking imuran and mestonin. I have had many drs in the process with alot of them not believing me. I have currently put on atleast 50 or more pounds. I was recommended by my dr to see a nutritionist. Thanks for listening love to hear more from you
Thanks again
Tanya

First of all, hi everyone, it's been a long time since I've posted. Been too busy.
Now, to add my little 2 cents worth on the weight issue. I'm on Mestinon only, have had only the weight gain that comes with advancing age and general decrepitness! :D But I've been able to take off about 30 pounds. Most of that began to come off months ago when i realized i was gluten sensitive. My weight loss eventually stopped, and then started a slow creep upward again. Within the last couple of weeks I've been trying to get a handle on that, and I think I've got it turned around. One of the foods that had been my favorite for eating out, I finally realized was probably glutening me through cross contamination. So I cut that out. I've also added in an exercise routine using a video I've had for years called Callanetics. I definitely have to go at my own pace, and cannot do as many repetitions as the video calls for, but I've been able to manage it so far because the regime calls for slow stretching type exercises, and very gentle movements. Just the thing for this aging myasthenic.
Hugs to all :hug:
Lois