Weight Loss/Bulbar-ALS

[Jules45]

I understand that Bulbar patients can sometimes lose weight because the can't swallow/eat.

I've also heard that sometimes the metabolism for ALS patients runs higher. I'm not sure if that is the case with me.

If I'm eating and don't have swallowing problems (yet), what could the relationship be with my losing 12 pounds in 3 months?

I've been extremely anxious about all the ALS testing I've had and very nervous constanly where i have trouble sleeping.

Could this be a cause for weight loss?

Thanks and God Bless.

 

[BarryG]

Hi Jules;

Since I got my diagnosis of Bulbar ALS in Feb 08 I've lost about 40 lbs and I don't know if my metabolism has increased or not. I have been skinny all my life and am one of those people that could eat whatever, whenever and not gain weight. Losing weight, on the other hand, was something that I could do easily and I'm sure that my recent weight loss is related to the difficulty in chewing and swallowing.

Has your diet (amounts and types of food) changed? I think that it is entirely possible that anxiety and sleep problems could be the cause of your weight loss. I know it's hard but try to think positively.

 

[planningguy]

Jules,

Where di you read that PALS have increased metabolisms. I had never heard this before. I guess I had always assumed that weight loss was due to a reduction in food consumption because of difficulty chewing and swallowing.

Take care,

Robert

 

[sukilou]

Robert,

My ALS neuro has told me that ALS is a hypermetabolic disease, and it was essential that I not diet (I'm overweight), but rather to put the emphasis on good nutrition. So the upside to all this, I finally have a doctor who tells me to not lose weight.:smile:

 

[BethU]

I understand that if you're nervous and amped up physically (tapping fingers, restless, etc.) that can burn up calories. Same if you are twitching.

With me, my weight loss was clearly because I couldn't eat much; at the same time as my symptoms started, I lost my appetite for most foods ... could only eat a few, and only very small portions. For instance, a Whopper Junior lasts me three dinners. So I force myself to drink supplements, etc., for the calories and other nutrients.

Difficulties with chewing/swallowing also play a major part. It's an ordeal to eat.

Another possible cause of weight loss is atrophy: muscle weighs more than fat. If you are losing muscle, your weight will drop faster than if you are losing fat. And vice versa ... if you are trying to regain lost muscle weight, you'll need to add more fat (by volume) to your body. But I don't know if that's really a factor or I just made it up. The muscle I have lost so far is small volume-wise, although it has a big impact on my functioning.