Weight loss ??


I have not been diagnosed with MS but have been told that it is likely that I might be, since I have symptoms consistent with the condition, and brain mri showed several patches of demyelination. Am waiting to see MS specialist consultant.

One question I would like to ask is about weight loss. I have looked and looked online, but as far as I can see there is no connection between MS relapses and weight loss.

However, during two of my ‘episodes’ (which have been about 9 months apart; both seemed to last 2-3 months), I have lost considerable ammounts of weight. I am quite slim anyway and the weight loss has put me below healthy BMI. The first time I saw a neurologist, I actually got a bit of a lecture from the nurse (who weighed me before I went in) about it - she then asked if I wanted a referal to a dietician. But the weight loss is definitely not through dieting, my apetite has actually increased, and I eat reasonably healthily. My GP has checked for all the obvious possibilities such as diabetes, thyroid, infections etc. In between episodes, my weight returned to normal.

I have not been able to find (from looking online) any links between MS flares and dramatic weight loss, which has made me wonder whether the cause of my symptoms may be something other than MS. I am seeing specialist quite soon, so should be able to ask him about it. But until then - does anyone else have experience of this?

I lost a lot of weight each time I had a relapse - I had a lot of problems with vertigo and balance which made me really nauseous so I completely lost my appetite. I ended up incredibly weak and wobbly. It’s been a year since my last relapse and I’m now a stone heavier. Not sure if it’s common with relapses - hope you get more answers soon.

I lose weight during relapses too, but my normally healthy appetite does tend to reduce when I am sick and sad, so it isn’t hard to see why in my case. Like you, I put it on again afterwards, but it can be a bit of a struggle and take a while.

It is an interesting thought that your weight goes down in relapses even though you continue to eat as much as or more than usual. I wonder whether the actual ‘calories in’ total would bear out your subjective feeling about how much you eat at these times? Do your food choices change at all? Is it possible that calorific intake might actually dip a little bit when you are unwell, even when you feel that you are eating plenty? If you are a person who has to tuck in to keep your BMI in the heathy range, even a slight reduction could have quite a big effect. Or maybe your body just burns a little less efficiently when you are unwell? Maybe mine does too, and appetite is actually only part of the picture? Goodness knows!


I was losing weight before I started showing signs of ms, I put it down to not really eating like I was. I have lost nearly 2 stone in total gone from a size 16 to a 12 and even managed to fit in a size 8 top the other day. I haven’t been cutting down on food actually eating more chocolate than I should tbh. I have put back on about 5 pounds but think that’s all my tummy, legs and bum are still much smaller and unfortunately my boobs (gutted on that 1!) I put it down to ms maybe it is a sign? Oh well one side effect I am pleased with but would rather be a chubby 16 and healthy again!


just don’t get rid of all your clothes yet.

i lost loads of weight just before dx.

so being female i was chuffed to be only 9 stone and took my clothes to the charity shop.

as i’m 5 ft 9" i was underweight and kept getting nagged to eat more.

i’m 10 and a half stone now and my BMI is good.

but i’ve had to take all my new size 10s to the charity shop and buy 12/14s - so annoyed because i already had those!

carole x