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annabelle1619

New member
Joined
Mar 11, 2009
Messages
6
Reason
PALS
Diagnosis
02/2009
Country
US
State
WI
City
MIDDLETON
hello, new here. i'm 31, a mommy of a gorgeous 4 yr old, female (obviously:oops:), newly diagnosed, freaked out. i have limb onset. i have no breathing nor bulbar symptoms to date. just my body.
i have a primary question. does anyone else have the symptom of being really sick with their als? no appetite, yuck-o feeling. i have always been a good eater and the last month i simply CANNOT get an appetite. the evening is a bit better than the day, but in general i feel nauceous, yucky. again, nothin' to do with swalloing or choking or anything like that- just with the appetite. i never see this as a symptom of als, wondering whether this is als causing this lack of appetite, brain fog, shaky, genreally ill feeling. all i mentioned are motor issues (along with swallowing, breathing for those with bulbar).

i would so love to hear if anyone presented with 'generally not feeling good' and any hints for dealing with this aspect if indeed those have experienced it.

i was so happy to find a forum like this- i have noticed seemingly many more with bulbar onset. is this because those with limb can't type?

and finally, what is a PEG?

best! annie
 
Hi annie and welcome. I'm sorry but I can't answer your fitst question because I haven't experienced or heard of a loss of appetite associated with ALS. As far as the seemingly higher number of bulbar onset on the forum in my case it is an opportunity to communicate. Because I can't talk this gives me a way to express myself and keep in touch with others. A PEG is a pericutaneous endoscopic gastronomy tube which is a feeding tube which goes into the stomach from the outside just above the belly button. If you google peg tube you can see pictures. It sure helps to get adequate nutrition when it is difficult to chew and swallow food as is my case
I hope this info helps.
Barry
 
thanks, barry. the internet is an amazing resource. it is great that it allows you to be with people and communicateand have your voice despite having lost your physical voice! and thanks for the answer re: PEG.

anyone else have ideas on the appetite loss? despite no swallowing problems?
 
Hi Annie, welcome to the forum but I'm very sorry you have to be here. My Dad has bulbar onset like Barry and in addition to his swallowing problems he has a much smaller appetite than he used to and has often complained of the same feeling of nausea you describe. My mom and I have to literally plead and beg him to eat more than he does. He has lost a significant amount of weight and this is not a good thing with ALS. However difficult it may seem, try your best to eat as much as you can and keep your weight up. Many people with ALS will tell you that it is the best thing you can do to slow down the progression. Eat the most fattening foods you can find and make sure you get plenty of essential fatty acids and Omega 3's. Fat is brain food and since ALS is a neurological disease, it's best to keep that brain as nourished as possible.

All the best! You will find amazing support here from a fabulous group of individuals. Congratulations on your 4-year-old. I'm sure she is a ray of sunshine! :)
 
My husband lost about 20 pounds after he was diagnosed. This was due to extreme depression, anxiety and shock. He felt so lousy! After getting on Lexapro, he regained his appetite and his weight.

Not saying this could also be your problem, just relaying our experience.

It is very important that you keep your weight on for as long as you can.

Very sorry you have ALS. We also have a young child.
 
Annie ... on the appetite question, I have had no appetite since my symptoms started (in March, 2006), and usually have to force myself to eat. I had no real swallowing or chewing problems the first year ... just some mild issues, so it was not connected to that.

Lost 24 pounds the first 2 years until I was diagnosed last May and told to do anything it took to keep from losing more. I'm holding steady now, but lost 3 pounds when the feeding tube was implanted.

What I attribute lack of appetite to is being really sick. Even though most of the time I haven't felt "sick" or nauseated, my body knows what's going on ... and when I lose my appetite you know it's serious. I have found that with ALS, I can only tolerate certain foods, which is very strange, because they've been foods normally I don't care for. Like potato salad. For several months, that was 75% of my daily diet ... it was the only thing I wanted to eat, so I had it for breakfast, lunch and dinner. Then cheesecake. Had to take vitamins, etc., and keep track of my protein to make sure I got enough.

This disease is SO STRANGE ... and it seems to affect so many behaviors. I'm on a feeding tube now, so it's Ensure 4 times a day, but my mouth still wants in on the action, so I eat a cookie or two to keep my taste buds happy.

My only advice is, if there's anything that appeals to you, eat as much of it as you can. Add calories where ever possible (extra margerine, protein powder in shakes, etc)
 
thanks for the thoughts. so it sounds like some PALS do, in fact, have significant appetite loss, and yucky feeling. any tips on eating when you just sure don't feel like it?:confused:
 
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