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Lacking An Appetite
Lately I have had much less of an appetite, and the problem seems to be getting progressively worse. I get tube fed every night, so I have never had much of an appetite in the morning. But that has been the case for almost 20 years, and I’m only recently noticing a difference. My hunger doesn’t come on till later in the day, and some days not at all. Any idea what is causing this?
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10 Replies
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Hmm, not sure. Have you talked to a doctor or specialist about this? It’s hard for me to relate exactly, because I don’t use a feeding tube and I eat like a pig haha. But I would recommend asking a doctor if you think it’s an issue.
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Yeah I’m going to the Dr on July 3.
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Cool. Let us know how that goes. I’d also recommend talking to other adults with SMA who use a feeding tube, either directly or through messenger.
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Here’s my 2 cents on the matter. I agree with Kevin about asking the doctor, glad to see you’re pursuing that. While I’ve never had the issue of maintaining weight, I’ve always noticed my appetite didn’t match up to others. I never felt I got my money’s worth at buffets, and found it odd when others are snacking at odd hours. I just don’t think some of us have that sensation of being hungry if that makes sense. Not to mention it takes a lot more effort to get food to my mouth. Sometimes it’s just not worth it. I did find a pretty good catapult method with a fork, but doesn’t work with all foods. Feeding tube didn’t change my appetite much either. People always ask if I feel full from it, and really I don’t.
I know you’re not on Spinraza, but I’ve heard others say it’s increased their appetite. I find myself snacking more too. It’s almost like it’s woken up my muscles as well as other sensations like appetite. Totally a personal opinion.
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Fascinating info; thanks for the post, Emma!
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Hey everyone!
I also have a very small appetite, it’s always been like that and frankly it annoys me, not being able to finish a dish you really like or having peopke always notice how small you eat is a bit frustrating. I know sometimes SMA has side effects you don’t really expect and this appetite thing always intrigued me because i found it quite recurring in the people I met with our disease. So I’m not really sure of my information but here’s what I found out. One of my doctor told me that from what he noticed throughout his carreer working with SMA is that often either his patients had a very big appetit or either a very small and that there weren’t really like middle. But he couldn’t explain this phenomen and that’s just one doctor observation.
But then I read an article about the hormone called Leptine that is the hormone of satiety (not sure if you can say that in english sorry) but can also impact motor function. And a big % of SMA people have an amount of this hormone that is either very high or very low, not in a normal amount. I found it so interesting i asked my doctor to do a blood test on this hormone and the result indeed matches i have an excessive amount of Leptine. I did it one year ago and plan on doing it again in one year to see if it evolves. So maybe you can bring that hormone in the conversation with your doctor and see what he thinks of it. ( mine had never heard of it associated with SMA until i brought it up)
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Thanks for sharing Emma! I agree that people with SMA tend to either have a large or a small appetite. I’m not sure exactly what causes it either, but it’s a good point to bring up.
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Hey Emma, that is fantastic information. Thanks!
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Very interesting Emma. I have certainly noticed the polar opposite weight trends in SMA. Never knew the Leptine link. I wonder if any the new treatments will have any impact on those levels.
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I also haven t big apettite in the morning ,but when is time to lunch I can good eat,specially when is night i get really hunger,but then I must control myself,because I won t to get overweight.Then I usually eat little chocolate or some small cake.Most people in night have bigger apettite.
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