• Weight Gain and Loss

    Posted by bns-staff on February 10, 2022 at 9:56 pm

    To me, weight and MG have a strange relationship. I gained over 25 pounds when I was on Prednisone, but before I was losing weight because I couldn’t chew or swallow much food. And exercise is a whole different issue due to muscle weakness.

    Has your weight gone up or down because of MG? How did it make you feel? Do you have any successful exercise routines?

    barbara-e replied 1 year, 10 months ago 5 Members · 5 Replies
  • 5 Replies
  • robert-davidson

    Member
    February 11, 2022 at 8:45 pm

    In my case, I had lost 75 pounds over about 18 months (from 245).  My PCPO did many scans to identify if it was cancer; weight loss being a common symptom of cancer, but all scans were negative.  Then I started having droopy eyelids, some breathing distress, and weak, drooping neck so went to my PCP.  Her Physician’s Assistant immediately sent me to the ER.  I was referred to a Neurologist who I was told is one of California’s specialists in MG.  He thought I had mild MG for about 18 months prior but without bad enough symptoms to go to a doctor.  He stated that even mild breathing distress causes the body to “massively” burn calories and that is why I was losing so much weight even though I was eating full meals.  He also sad that people who lose a lot of weight due to cancer or other diseases look sickly and I didn’t.

  • barbara-e

    Member
    April 2, 2022 at 12:29 am

    I was diagnosed with MG over 20 years ago, but was in remission between 2008 and last year. Now that it’s back, I was already overweight and worried about gaining even more. Not only was it adding to my health issues, but I felt like any minute Greenpeace would try to drag my fat carcass back to the water while calling me Moby Dick! At one point, when my bloodwork came back, I had the highest insulin level that my doctor had ever seen. You know it’s bad when your doctor and his staff are all shocked! I knew things needed to change!

    So I returned to a low carb/high fat food lifestyle last fall. I’m following a program under my cardiologist’s supervision. His belief is that if his patients manage their weight, less of us will become diabetic and we’ll be less likely to end up on his surgical table. It doesn’t require exercise. Several years ago (pre-pandemic), I met one of his patients, who was in a wheelchair and had lost over 100 lbs. to achieve his goal. You can be skinny and still be weak and stiff. So, what we eat affects our weight and exercise affects strength and flexibility. Of course, being physically active will help with weight loss, but I feel it’s also easier to become more active when I’m not so overwhelmed by weight.

    Once I returned to the guideline of limiting carbohydrates to 6-10 grams per meal, my weight quickly started going down to my current loss of over 40 lbs. – along with my insulin and blood pressure levels, which are now normal. I’m not hungry at all, and feel very content with what I eat. The only thing that I sometimes miss is the various fruits that I use to enjoy, like citruses, bananas, etc. So I stick to the occasional lower carb fruit (like berries) instead. I’ve even been able to easily eat out with friends without drifting from the guidelines. After I get to a maintenance point, I’ll be able to try making variations to the plan to see what I can do without having a negative impact on my weight. But, for now, I’m very happy with my food and progress!

  • doris-vedder

    Member
    April 9, 2022 at 4:45 pm

    I have lost 50 pounds in a year due to swallowing problems.  I am on 5mg of prednisone. I am 2 weeks post op thymectomy.

  • jessica

    Member
    April 29, 2022 at 8:14 pm

    I lost 20 lbs due to being in the hospital,not being able to swallow anything even my own saliva, and not given any substitutes like TPN for 16 days. When I was able to take in purées, I was started on prednisone at extremely high dose and gained it all back and then some. Now that I finally can eat solid foods, I am afraid I will continue gaining weight even though I am working with a nutritionist and am very disciplined.

  • barbara-e

    Member
    April 29, 2022 at 9:08 pm

    Hi Jessica,
    Under my cardiologist’s supervision. I’ve been very successful by following the low carb/high fat eating guidelines. His belief is that if his patients can manage their weight better, we’ll avoid diabetes (or have less problems with it) and will be much less likely to end up on his surgical table.

    Basically, each meal should be between 5-10 g of carbohydrates. It’s simply real food and I’ve never had any trouble with being hungry or finding options when eating out. If I want to eat fruit, then I choose something like blueberries or raspberries (love ’em with whipped cream), which have less carbs than other options. At times, I’ll eat anything that I want — like my birthday’s chocolate lava cake a la mode — and still loss during my next check-in.

    When I’ve had trouble swallowing, I’m able to make choices that weren’t difficult to swallow and still kept me on track. Also, my weightloss hasn’t been stopped during times when my symptoms kept me from being physically active. I’ve been thrilled by my progress and plan to continue!

    If you want to know more details, just let me know or look for other info sources online. Good luck!

  • dave-hall

    Member
    May 5, 2022 at 1:16 pm

    When I retired I weighed 215-220 lbs.  Two years later I was diagnosed with MG.  Now, three years with MG, I weigh 156.  I am careful with what I eat and how much I eat.  I do walk in a therapy pool for an hour three times a week.  Then I take my “off road” walker and walk a mile in the park twice a week.  I don’t know if the MG has caused my weight loss, other than making me aware of my overall health.

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