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Hi,

I have suffered from a decreased appetite and inability to have a normal weight (i think i am about 14 pounds underweight)- even though i eat normal size meals/diet.

The only time i can gain weight is if i eat excessively, like 4-5 meals a day.
and as soon as i go back to 3 meals a day my weight goes back down.

So i was wondering do any other MS'ers have this symptom of weight loss/loss of appetite ?

- was alwyas a stocky well built child, but by the age of 14 i suddenly lost lots of weight and was unable to put it back on
- diagnosed with MS when i was 17 following an attack, - ive had progression since, no more attacks since the first one.

I think there is a loss of muscle mass if you don't exercise. Also, we do expand a lot of energy when we do move,,,more than other normal people... my 2 cents....

I wish.........

I'm fatter but my appetite hasn't been affected, just the amount of work I do. Also I've suffered from leg cramps for some reason so no muscle wastage yet.

I have a huge appetite but I lose weight very easily. I do think it's to do with MS - I think maybe we require more energy to do the same physical effort as normal people, another explanation I've read for MS fatigue.

thanks for the replies, i guess weight loss occurs in few MS patients and weight gain is more common - but this weight gain is by choice - over eating.

My weight loss is not by choice - i can eat a normal diet and still stay thin/underweight.

.

adamt wrote:
thanks for the replies, i guess weight loss occurs in few MS patients and weight gain is more common - but this weight gain is by choice - over eating.
I'm not sure if that's the most accurate or gracious way to put it but

+1

Another factor for MS'ers who are tending to overweight is mobility. Our bodies may have the same appetites but MS'ers may be limited in how much exercise they do....this is not the same as 'over eating' although I know where you're coming from.

Another issue for MS'ers is meds - pain meds, steroids and others can all cause excess weight. Just some 'food' for thought before you categorise people as overeaters.

I have a very high metabolism and can burn off even overeating, even without much exercise, but others are not so fortunate.

The weight loss issue is a huge problem for me. When I was diagnosed I was fat...I weighed 197 lbs. Seventeen years later with this and I am at 85lbs. I never feel hungry and can go days without eating and not even blink an eye. I have to have a schedule to remind myself to eat. I don't take any DMD's so I can't even blame that.

I've lost 50 pounds in two years and if I don't make an effort to eat weight goes to 114 pounds at 5'5". If I start to feel fatigue and weakness not improved by rest it's usually because I haven't eaten enough and my weight is too low. There's rarely an appetite, I eat a little at a time because it's so uncomfortable being full, and everything I eat has to be cooked to death. I live on salmon and other fish, a variety of soups, peanut butter & jelly sandwiches, low acid orange juice, nutritional drinks and some vitamins. Jelly beans are my treat.

I do think moving burns up more calories in someone with MS.

Have you had a medical check for reasons you might be losing weight? I wouldn't assume it was an MS thing until you've done that. An obvious thing to check would be celiac disease. Also thyroid.

That said, I myself have a terrible time keeping my weight up. I am underweight and have a very low BMI.

But I would recommend you start with a GI workup before assuming it's MS. Good luck.

I am also.underweight. 105lbs at 5'5". I have had all the tests, upper GI, colonoscopy, thyroid test. Conclusion, I have a very slow system and longated colon due to MS. I have to take senna pills to make my system have a bowel movement every 3 days, otherwise it would be every 10 days.

When I'm full, I won't eat. I just don't feel like it and I stay full for almost 2 weeks at a time if I don't medicate. Even with a bowel movement every 3 days...I find it hard to eat a big meal. We're all affected differently with MS, there are just as many with this symptom as with others.

Take care. I hope you still get checked, to make sure it is MS and not something else.

Villagemaid wrote:I wish.........

Me too. Ever since the onset I've been gaining slowly but steadily

I found this searching on the web, I know it's an old post, but....here's hoping someone reads it.

I was dx'd w/M.S. in Jan. '13, and I've lost 65lbs. since then. I think most of it is fat, but there's definatly muscle mass too.

I am NOT a small build, I'm kind of like your typical burly man, grizzly bear kind of guy, 6'5", was about 280, which was pretty heavy even for me, but now...I'm 215 and weirdly skinny. People say I "LOOK GREAT! what are you doing?!" oh you know...getting M.S. feeling like shit. The usual.

My appetite can go forever without wanting to eat, which isn't normal. And then right back to feeling like I'm hungry all the time.
Some days are better than others, then somedays walking up the stairs and I'm drenched in sweat. I also have disc disease, Syringomyelia, Chiari Malformation from trauma, not congenital, and Ehlers Danlos Syndrome type 3 hypermobility.

I was an athlete when I was younger, I've been this light before, but w/a 33" waist and JACKED with muscle. Now I'm a 36" waist down from 44" and absolutely NOT jacked with muscle. I make sure I get ensure w/skim milk on the days I just can't eat, and when I can I do eat. But I can't gain weight. I can put it back on, for a bit, but I always lose more, like three steps forward, five steps back. I lost 7lbs in one day once. I even lost weight DURING the day, as in usually we are lightest in the morning? But I weighed less after the end of the day.

all my clothes don't fit. and I'm wondering if I'll go back up in weight.

I'm on copaxone, and monthly Solu-Medrol drip, plus a slew of other medications for all of my other issues/medicals.

Not sure it this helps or if someone can help me?

hey there welcome.

appetite and weight can be linked to zinc status. serum zinc is often on the low side in athletes and ms patients. there are many more nutrient issues shared by both athletes and ms patients, but I've zeroed in on zinc here due to the appetite and weight issue specifically.

Serum zinc in athletes in training
http://www.ncbi.nlm.nih.gov/pubmed/6174470

how many mgs of zinc are in the ensure, just for a sense of a baseline daily intake?
also when you can eat, what kind of foods do you eat the most often?