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No appetite & weight loss

Hi, I was just wondering if anyone else suffered from having no appetite and weight loss as that is what I’m currently going through. About 2 weeks before my diagnosis I was having a weird sense of appetite and finding it hard to eat however since I have been officially diagnosed with MS I’ve noticed that it’s gotten worse and now I’m losing weight that it’s noticeable and people are telling me. If anyone has had the same problem, please could you let me know how long for and how you got through it? I was thinking it could also be stress related, as I’m due to start a dmd soon, I’m in the middle of uni exams and I’m still getting used to the confirmed diagnosis.

Hi there your plight mirrors how my situation was 9 years ago. I too was doing final exams at uni. It is stress related, however you need to tell ms team or gp if you haven’t got ms backup yet, just to rule out other things. I’ll be honest it took me a while to get​ my appetite back but you need to tell someone before it escalates. My weight plummeted rapidly, ironically I was studying to be a dietician! You have a lot going on right now & you need some help, what year are you in? I got so bad I had to put in a mitigation form, but I did pass & got my degree, granted it was a 2:2 should have done better, but if you tell uni they will understand what you are up against, will certainly help with the stress & take the pressure off good luck let us know how you get on Tracey x

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Hi,

MS is a hugely variable disease, but does not typically cause appetite problems or weight loss - unless you have physical problems with actually swallowing, which can arise, but I assume you would know if this were the case.

I think you may be onto something with the stress theory - I used to go right off my food with exam nerves, although some people go the other way and comfort-eat.

It may be worth getting it checked out, just in case it has nothing to do with MS - or nerves - unexplained weight loss should be investigated.

It’s clear you’re not on DMDs yet, but are you on any other medications for symptom relief, and if so, did you check the patient info leaflet to see if reduced appetite/weight loss are possible side-effects? I think weight-gain is a more common issue with drugs for MS symptoms, but if you are on anything, it’s still worth checking the leaflet, in case it says anything that might explain things.

Tina

I had a relapse years ago that affected my appetite, i just didnt want to eat anything at all, i lost 3 stone,i had to make myself eat a slice of toast or cereal every day just to survive,it did last quite some time, about 9 months i think, but my appetite slowly cam back, but thinking about it, i have never had much of an appetite,so i try to eat little and often.

it could be the stress you are under with your exams and getting an ms diagnosis,both cause stress, try to find something to relax you,it may help,i do mindful meditation to help my stress levels.

I think you could be right about the stress aspect, and you certainly do have plenty of that to deal with. I go off my food when I am ill or worried - during a relapse, for instance - and it something that a person cannot do much about, really. Some people are affected the other way and find themselves eating more than usual to self-comfort, or whatever.

Having said all that, loss of appetite and weight loss are always worth reporting to the GP. Even if you are pretty sure you know why, it is still always worth reporting.

Alison

NUTS - not being rude - but get some mixed nuts/seeds and nibble at them during the day. Lots of goodness- and very appetising - its a job to stop eating them.

And B12 is essential.

On of the first signs that I had MS was that I lost weight. It made me happy at the time - I went from being a size 12 to an 8, without any dieting, extra exercise or any noticeable stress in my life. I was diagnosed a bit over two years later - most of the symptoms that were a clue I had the disease had been affecting me for four or five years.

I’m surprised weight loss is not recognised as a symptom of MS - I know several people with the disease who are very thin (and lots who are not thin at all). I have read stuff saying that the nerve damage means your muscles need more energy to work, in information about the benefits of an FES.

My only (not very helpful) tip would be to eat plenty, but try to keep to healthy foods.

I should also have said - I also have a pretty poor appetite. I try to eat plenty and regularly, even though I don’t feel hungry.

I lost 5 kilos while was on steroids during the diagnose process. Obviously was very stressful/ worry time. A year after still struggling to gain. I’ve always been small but not under weight. I have a good appetite but seems impossible. Checked with GP all ok could be that nerve damage thing.

My weight fluctuates. Now I know why!! If I was a normal person I would eat healthily and exercise 3-5 times a week…im not, sometimes I can’t get up to prepare food or leave the house to get to the gym!! Other times I’m gym obsessed (until I injure myself!)…i still class it as laziness though. If I succumb to “fatigue” I worry about ever getting up again?

i lost a lot of weight the year before my diagnosis.

i went from a size 12-14 to size 10 practically overnight.

i was chuffed to be wearing a 10 although my nearest and dearest were worried.

took all my clothes to the charity shop and went on a spending spree for size 10 clothes.

however 12 months later my weight went back to how it was.

back to the charity shop with my size 10 clothes (boo hoo) and then had to dig out my bigger clothes.

so beware geting rid of your clothes when you lose weight. better to bag them up and put them in the attic.

carole x

Hey traceydc46, Anitra, mrsJ, alison100, spacejacket, sewingchick, Erida, nkmharris and pigpen,

Firstly sorry for the late reply, been a little busy trying to stay on top of things with the recent diagnosis.

I think its deffo stress related because I’ve noticed that I’ll have a couple good days of eating and then my appetite will play up again.

As for uni, it was my final year and last set of exams, so I filled in a mitigating circumstances form and one of the MS nurses wrote me a supporting letter.

I’ve been researching suitable types of foods for people with MS, like the mediterranean diet as suggested by one of the MS Nurses, I also added a few energy foods to my daily meals, including some Nuts and I’ve been forcing my meals whenever my appetite seems to disappear, I find eating slower helps this too. I’ve also informed my GP and I’m keeping a track of my weight.

So hopefully this phase will pass soon and thank you all for your comments and advice, its much appreciated.

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Hi Charlz, nice to hear things have improved for you, uni is excellent when you inform them, they wont penalise you because of the problems you’ve been having & will take all into account, good luck with your exam results!!! Let us know how you get on Tracey x

Hi Chariz

Spacejacket is right. For a year before my DG, I dropped from 8st. 6 to just over 5st. B12 is a must, I had them daily for a couple of weeks, then weekly, now have 1 every 3 months (5 years on)

Now up to 8st 4 ish, and do not vary much. I think MS can effect your appetite & weight, also stress is a major factor, so the two together are an upward struggle.

All day food, homemade cereal, big tub that lasts a month.

Packet Muesli, half a packet of oats, mixed nuts, sunflower seeds, dried cranberries, apricot, banana, pumpkin seeds, goji berries etc.

Small scoop, with natural greek yoghurt and I use grapefruit or orange juice with it as I don’t like milk.

Also use a weighing scale in say Boots, which shows your BMI as well, if you are under, the Docs advise to eat some full fat, butter, cheese, chocolate etc.

Just start being a bit selfish, rest when you need to, set yourself targets, when to eat, sleep, relax, study and play.

All the very best, chin up sunshine - you will make it.

Mary x

Hey Tracey and Mary, thanks for comments and your support, it’s much appreciated. X

Hi Charlz, your welcome just keep your chin up, you’ll be a graduate soon!!! Happy days!!! Tracey x

Yes. I am currently having the same symptoms.I was dx in 2004. I have always maintained the same weight. When i did work, I just sat around so I gained a lot of weight. I then got a exacerbation and went from 152 lbs to 119 in a month and a half. I slowly gained some back and stayed at my normal 138lbs. Then last summer I went from 138 to 122 and I struggle to eat. I am never hungry. This year it has been a rough year with mini relapses here and there, so maybe for some people this happens. I also have low blood pressure. Not sure if that is related.