Progression

[Chelle73]

This probably sounds silly but I’ve been thinking about this in last few days….
I was diagnosed in Feb 22 with suspected first symptom in 2020 now I’ve started to lose weight…. I’ve gone years trying to maintain or lose a few pounds but now as soon as I get a diagnosis all of a sudden I’m losing weight?? I mean I clearly had mnd prior to the official diagnosis so why now do things seem to have accelerated… is it all in my head ??
sorry for the rant of what is probably a stupid question

[shelly21]

Maybe anxiety. I know on bad days I struggle to eat. Obviously they tell us not to loose weight so if you're concerned maybe add the calorific stuff to your diet x

[denise]

My husband had been losing weight but I didn't really notice at first. 5 years ago he was diagnosed and I d say he lost about 2 stone ok cant do weight in the other stuff. Hes now been 12 1/2 stone for 9 months if not longer. I'm making sure hes eating well with lots of nice things to encourage him.

Perhaps have things that you really enjoy and a few naughty things as well.

Lots of love
Denise xxx

[Chelle73]

Maybe anxiety. I know on bad days I struggle to eat. Obviously they tell us not to loose weight so if you're concerned maybe add the calorific stuff to your diet x

I never thought anxiety would contribute to weight loss but now you say it you’re probably right. I’ve never suffered with panic attacks or anxiety until after my diagnosis and now I’m really bad - trying to do controlled breathing as want to avoid meds as long as poss

[GillB]

Exactly the same happened to me. It might be anxiety but MND puts you into hyper metabolism. You have to up the calories massively. Cakes, puddings, double cream. If you are under a team ask for the dietician to visit you. They might prescribe supplement drinks. x

[JamesW]

Hi Chelle,

This would be highly dependent on your current symptoms but as some of your muscles waste you often compensate for them elsewhere and this can make even the simplest of tasks very tiring. This is certainly what happened to me with my limb onset.

So maybe your body might be working harder and burning a few more calories?

Just a suggestion,
James x

[matthew55]

No stupid questions here

[PeterPan]

In my case I’ve lost a lot of muscle bulk and I’ve also lost all interest in food and never feel hungry. This coincided with my swallowing becoming really poor. Feeding via the PEG seems to make me feel full very quickly. Over the course of two years I’ve gone from 97 kg (overweight!) to 70 kg (loss of over 4 stone)

[Ellie]

... I mean I clearly had mnd prior to the official diagnosis so why now do things seem to have accelerated…

May I ask you Chelle, what areas have seen this acceleration of progression as this might have a bearing on your weight loss, along with your anxiety. Also, are you eating less or taking in fewer calories in recent months/weeks?

I also think you should see a Dietitian and it is a fact that certain neurological conditions, including ALS, are 'energy hungry', and demand more calories, although not necessarily all from fat and carbs, protein is vital too (which is why a Dietitian should assess your individual needs)

Chelle, please, please don't view taking meds as giving in, an admission or anything negative - anxiety and panic attacks are due to a chemical imbalance in one's brain and if taking meds means a better quality of life, which we all need and deserve, then please think about it.

Love Ellie 🤗🤗😘😘

[Chelle73]

May I ask you Chelle, what areas have seen this acceleration of progression as this might have a bearing on your weight loss, along with your anxiety. Also, are you eating less or taking in fewer calories in recent months/weeks?

I also think you should see a Dietitian and it is a fact that certain neurological conditions, including ALS, are 'energy hungry', and demand more calories, although not necessarily all from fat and carbs, protein is vital too (which is why a Dietitian should assess your individual needs)

Chelle, please, please don't view taking meds as giving in, an admission or anything negative - anxiety and panic attacks are due to a chemical imbalance in one's brain and if taking meds means a better quality of life, which we all need and deserve, then please think about it.

Love Ellie 🤗🤗😘😘

For me it just seems that ever since diagnosis then weight loss has accelerated - I’m seeing a dietician next week. I’ve always had a small appetite but seems even more so now - my 12 yr olds dinner is bigger than mine.

[Ellie]

I’m seeing a dietician next week.

Oh, that's good Chelle - bottom line is, if you eat fewer calories than your body needs, any extra energy needed is taken from your reserves, and you lose weight. xx

[Johnny5]

Obesity is your friend. If you have diabetes, also, it is your friend. Both conditions are protective with ALS. Eat. All you can. I remember an old TV show with Eboneezer Scrooge, and the spirit of Christmas present. Santa was a big overweight man, sitting on a pile of treats and sweets. That is what we want. We want to be that big, overweight person and not a skinny Scrooge.

[Ellie]

Obesity is your friend.

Not if you have respiratory weakness.
Not for a feeding tube procedure if your swallow fails.
Not for manual handling purposes.

Having a few spare kilos, yes, but obesity, not ideal.

[JamesW]

Obesity is your friend. If you have diabetes, also, it is your friend. Both conditions are protective with ALS. Eat. All you can. I remember an old TV show with Eboneezer Scrooge, and the spirit of Christmas present. Santa was a big overweight man, sitting on a pile of treats and sweets. That is what we want. We want to be that big, overweight person and not a skinny Scrooge.

Hi Johnny,
I have type 2 diabetes had not heard that it was a positive thing for my MND, could you please elaborate a little more?
Cheers,
James

[Ellie]

(This has nothing to do with Johnny’s assertion about T2D and ALS.)

Think you lucked out on this James 😥😥 - Type 2 Diabetes is “associated with significantly lower odds of ALS in European population”, according to a recent study, i.e., having T2D lowers one's risk of getting ALS - not low enough in your case 🙁😘