Mysterious weight gain with ALS

[Lori7]

Hi. I was wondering if anybody knows what my rapid weight gain could be from. I was diagnosed with ALS in December 2023, and between February 2024 and May 2024 I gained 45 lbs. I was getting bigger and bigger, and had to go on a diet, going down to 2 meals a day plus some snacks. Since then I haven’t been gaining as much. I asked my neurologist if this possibly could point to a different diagnosis, but he said, no, you dont necessarily lose weight with ALS. As for swelling, I do have one swollen foot, and I can’t tell if my stomach is swollen, or just fat. Needless to say, this has helped fuel my denial that I have ALS. I asked whether the doctor would do a neurofilament light chain test, thinking it would help confirm my diagnosis, but they wouldn’t do it. They say the weight gain may be from my antipsychotic, seroquel, but I’m not willing to necessarily blame it on that. My genetic testing showed that I didn’t have the ALS gene. Has anybody else gained a lot of weight after ALS diagnosis, to the point where they can’t eat 3 meals a day?

 

[Nikki J]

Was seroquel new to you? Weight gain is extremely common with it. Sometimes limb onset pals gain because they can still eat but are less active. And buddha belly is common even without weight gain due to weakened muscles. Nfl is non specific and if you meet the diagnostic criteria wouldn’t negate the diagnosis no matter what the result. Have you had basic blood tests especially thyroid?

 

[Lori7]

Yes, I’ve had some blood tests done by my family doctor, including thyroid. The tests all came back normal. Seroquel is a new drug for me, but has helped a lot, so I have to stay on it. I’m the highest weight I’ve ever been in my life. I feel tremendously uncomfortable at this weight. Thankyou, Nikki, for your response.

 

[KimT]

I gained close to 30 pounds but I was eating like a pig, thinking that the extra weight would help me. I can still eat everything and I had a very small % body fat at onset since I was a runner and worked out a lot. I've lost, intentionally, about 10 of those 30 and feel much better. I'm a very slow progression, so the weight came of gradually when I had access to a pool. I'm at an ideal weight now but still feel fat because prior to ALS, I never weighed over 110. Remeron, which I take, can also add weight and slowing down adds much more, especially if you can eat and your breathing is still good. I also have Hashimoto's but, after ALS, my TSH went high. I think it ran low most of my life and that's why I could eat like a man and not gain weight.

 

[santimo]

I was diagnosed in late May and I have already gained 8 kg this year, I believe moving less and a lot of anxiety and a general "do no regret anything" mentality has led me to this, so I will start to eat a little more conciously.

 

[AP1967]

Several of my clinicians have specifically told me NOT to lose any weight. Before I was diagnosed I had just started Noom. I wanted to get off 20 lbs that had crept on during peri-menopause. But then limb onset and I couldn't walk the way I used to walk. Now my clinicians are saying to keep the weight because ALS increases your metabolism and they want the burning off to come from my fat and not muscles. So I am enjoying not feeling guilty about my treats, but in my head I wish I could have lost the weight and looked and felt better.

 

[Loulou22]

I have been very similar to yourself. When diagnosed I weighed around 57kg (Australian, sorry!) As I was suffering from crippling anxiety I was prescribed Lexapro and then Mirtazapine and since then have packed on the weight… about 20kg over 18 months!
My neurologist is always very happy when I get on the scales. I could be wrong but I feel like there is a link between weight maintenance and better prognosis.
Having said that, I have for some unknown reason lost about 4kg in the last month. I am still eating very well (no chewing or significant swallowing problems as yet.)

 

[sudulski]

Mine said the same, don't lose weight

 

[AP1967]

We can finally enjoy our sweets and pasta without guilt!