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broodjeaapspeciaal

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Hey everyone,

I have lost 3 kilo's in 3 weeks.. and i'm losing weight on a daily basis ( so it seems :( )

Is this typical for ALS? im twitching /cramping all over my body.. and i have some pin and needle sensations in one of my fingers now.

This is freaking me out :roll:
 

olly

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hello

i am sorry to hear your not too well.
i have had problems with weight loss since about january and at one point lost 11/2 stone in about 3months.
this was mainly due to bulbar symptoms /jaw spasms and weakness and not being able to chew.
the jaw spasms have calmed down but i still have weakness in the chewing muscles and get fatigued eating,but i am eating better.
even so its a struggle to maintain a good weight.
the speach therapist recommended eating puddings and more higher calorie foods for me.
its difficult to say why you have weight loss.
are you eating ok? worrying?
or it could be due to the fact your just not well.
if it continues please tell your gp as unexplained weight loss can be a underlying symptom and a worrying one.
take good care.
caroline:-D
 

sharonca

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In a meeting with an expert nurse on ALS last Sunday she explained to me how my eating habits were affecting me. The suggestion was that I should eat a big, fat filled, calorie laden breakfast and the same for lunch and then a smaller dinner. And that I needed lots and lots of water. By not eating much for breakfast and lunch and then a larger dinner and not as much water throughout the day I had really hurt my body.

I just wasn't hungry. But I need to get that way! My way of eating had robbed my body of nutrients throughout the day causing weakness and by losing weight I was burning muscle and not fat. We need to have fat to burn.

I guess if we cannot get enough in by mouth then it is time for a peg. Just how it works.

And the hardest ones was that by not drinking enough water and not being as mobile I had set myself up for blood clots in my lungs. Eight days in the hospital has made a believer out of me. My progression sped up and I'm in a very different place as far as my progression than I was two weeks ago. Lesson learned.

Sharonca
 

BethU

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Hi, guys ... I had lost weight, too ... 24 pounds in 2 years, 10 of them between my hospitalization in December and mid-January. I had no appetite at all, and even when I did want to eat something, I could only eat a few bites.

But when I was diagnosed the neuros told me I had to stop losing weight ... and said that studies showed that GAINING weight was even more effective than Rilutek in slowing progression. So I've really worked at it, and have gained 10 pounds since June. You sometimes have to force yourself to eat, but it's vital to not lose weight.

I make a milkshake with Ensure and a couple scoops of body-builder protein powder. plus about 1/3 gallon of ice cream (!), and some chocolate sauce. It comes out to two 8-oz glasses of thick shake to drink, with at least 25 grams of protein, and 1,000 calories! And it tastes really good.

I was having one of those for dinner plus a fruit shake for lunch, with Ensure, liquid vitamins, protein powder, lots of berries and other fruits, and orange juice. That was pretty good, too.

I can eat solids, but have no appetite for them ... even stuff I used to love, I can only take a couple bites. But these super-shakes go down very easily, and I eat several slices of whole-wheat toast slathered with margerine for breakfast and bedtime snack.

Broodie: If you are losing weight suddenly, I would check with your doctor right away. Are you eating normally and still losing weight, or are you not eating? Your doctor will probably give you a complete check-up, including tests for things like diabetes.

Good luck,
BethU
 

olly

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hi sharonca

you are so right about the regular eating.
the speech therapist also mentioned plenty of small meals spread throughout the day instead of sticking to just the usual 3meals.
this helps if you have fatigue of the jaw/chewing muscles.
my neuro always tells his patients to drink plenty of water.
i hope you are recovering from the blood clots in your lungs.
i hope your sudden spurt in progression does not last long and its because you have been so ill with the other things.
take good care.
caroline:-D
 

broodjeaapspeciaal

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Hi, guys ... I had lost weight, too ... 24 pounds in 2 years, 10 of them between my hospitalization in December and mid-January. I had no appetite at all, and even when I did want to eat something, I could only eat a few bites.

But when I was diagnosed the neuros told me I had to stop losing weight ... and said that studies showed that GAINING weight was even more effective than Rilutek in slowing progression. So I've really worked at it, and have gained 10 pounds since June. You sometimes have to force yourself to eat, but it's vital to not lose weight.

I make a milkshake with Ensure and a couple scoops of body-builder protein powder. plus about 1/3 gallon of ice cream (!), and some chocolate sauce. It comes out to two 8-oz glasses of thick shake to drink, with at least 25 grams of protein, and 1,000 calories! And it tastes really good.

I was having one of those for dinner plus a fruit shake for lunch, with Ensure, liquid vitamins, protein powder, lots of berries and other fruits, and orange juice. That was pretty good, too.

I can eat solids, but have no appetite for them ... even stuff I used to love, I can only take a couple bites. But these super-shakes go down very easily, and I eat several slices of whole-wheat toast slathered with margerine for breakfast and bedtime snack.

Broodie: If you are losing weight suddenly, I would check with your doctor right away. Are you eating normally and still losing weight, or are you not eating? Your doctor will probably give you a complete check-up, including tests for things like diabetes.

Good luck,
BethU
Hey,

First of all.. im not sure if i have ALS or not..
but i found out that i dont eat on a regular basis.. sometimes i feel hungry but im not in the mood to eat the most 'basic' things like bread on a normal time schedule.. i just dont feel like eating such things.. maybe its due to the anxiety, as im having twitching and cramping all over my body with pins and needles and i dont know if this is ALS of BFS. This started about 6 weeks ago after i feared i had other serious diseases like cancer :roll:

Some days i do eat as im used to.. but having 1 or 2 good days in a week doesnt really change anything.. and i dont have any weakness / atrophy yet.. well, not that i noticed so i guess its just the anxiety of having some serious illness.. and doing weird exercises while constantly monitoring my weight already shows my state of mind :wink:
 

brendapals

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cindy-please see your pm-thanks
 

sharonca

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another thing I heard at clinic today was who stress could make the disease progress. Less stress - less progression. And I think not eating puts a stress on the body. You may not feel like you are stressed but your body is having to figure out where to get something to burn for energy. If it has to pick muscle that is a BAD thing.

Sharonca
 

Al

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Losing 3 kilo's in 3 weeks is not normal for ALS. Pins and needles in a finger is not ALS. BFS maybe. Quit stressing and eat right. Give it 3 weeks and then check back here.

AL.
 
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