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worried over unintentional weightloss 6ft 4inches and 9 stone

Is weight loss common with ms my husband has been diagnosed by neurologist in february 2013 but is waiting to see neurologist in field of ms at another hospital that has Ms nurses. My husband gets alot of stomach pain and constipation he lost alot of weight about 2 yrs ago and despite trying cannot put it back on.He is 6ft 4 inches and only weights 9 stone this is seriously underweight for his height.He is very depressed at the momment and keeps telling me he has cancer.I keep telling him off and to stop saying that as his brother died of leukemia aged 24. Has anyone else lost alot of weight with ms without medication being the cause.As at present he has not got any medication for the pain and i think he is finding muscle cramps painfull.Could the muscles in stomach intestines be causing weightloss? Very puzzled julie

Hi Julie,

I would say it’s not a “normal” symptom, and that most of us with MS are either average weight, or perhaps even struggling with weight. Enforced reduction in activity coupled with weight-gain side-effects of some common MS drugs can make it a struggle.

However, with MS, there’s not really any such thing as “typical”. Someone whose digestion remains unaffected isn’t likely to experience weight-loss as a symptom. However, it is possible for MS to affect digestion, and in that case, weight loss may be an entirely natural consequence.

I think it needs investigating either way, and shouldn’t necessarily be viewed as all part of the MS. I’ve just re-read your post, and see that diagnosis was only very recent!

I do think you need to raise the weight-loss issue with the new neuro ASAP, and see whether he thinks it’s all likely to be related. Or perhaps, if the appointment is still some way off, to see the GP in the meantime. My concern is it might be absolutely nothing to do with it. It is unusual, but not impossible, for MS to cause radical weight-loss - especially in someone newly diagnosed.

I’ve been diagnosed about two-and-a-half years, and am struggling to keep weight OFF.

Tina

Thanks tina its worring me has been for some time he has an appointment first week april to see the ms neurologist approx month away he said he is still getting alot of pain in stomach he looks like a bag of bones he used to have such a healthy weight before.He doesnt have much faith in his gp as they previously told him they couldnt find anything wrong with him when he started to go with symptoms 2yrs ago.It was his opthalmologist at hospital who sent him for mri and found the lesions on his brain as he seen them regularly for his uveitis.Really hope it is a symptom and he hasnt go anything else wrong i love mr grumpy to bits,lol mr grumpy is what me and kids call him when having one of his moods. xx julie

Hi again Julie,

Unfortunately, as you’ve found, MS is a tricky one to diagnose, and many of us have made umpteen trips to the doctor before anything serious was suspected. I don’t think this is necessarily a reflection of a bad doctor - it’s just so damn hard. For example, one of my earliest symptoms was pain in both feet, but after X-rays and ultrasound showed only a “minor” structural abnormality, I was told it was unfortunate, but just the way I am, and discharged without further investigation or treatment.

My GP was extremely apologetic when I was finally diagnosed, as she realised all the other things had been connected, but I can’t really blame her for not immediately thinking a patient’s painful feet, or, on another occasion, sore leg, were really a problem with her brain and/or spinal cord.

It is vital to have faith in the GP, though, so if Hubby really does feel that important clues were missed or dismissed, and that it’s not just part of how slippery MS is, perhaps he should consider a change of doctor?

I’m thinking, at 6’4" but 9 st, he must be visibly emaciated (sorry!) by now? I’ve very surprised nobody has already picked up on this as a matter of urgency.

I think perhaps I wouldn’t hang on another month to the neuro appt, and see the GP - or a different GP - before then.

Is Hubby actually eating less, that you’ve noticed - perhaps due to pain, nausea, or swallowing problems - or is he eating the same as ever, but just doesn’t seem to be getting the nutrition from it?

Please get it looked into. It might be something else - but it also might turn out to be a more treatable “something” than MS. For example, if he has an obstruction somewhere, it might be possible to fix it!

I’m sure you do love him. I don’t have a partner, and it’s me that has MS anyway, so I can’t really imagine what it’s like being the other side of the fence, and being the partner that has to deal with it. Very tough on everyone!

I’m still out and about and walking, 2.5 years after diagnosis, and things have not changed that dramatically for me, so there’s always room for optimism.

Tina

x

Thanks tina yes he looks ill he wont wear anything that shows his arms he is embarased how thin they look he said my 7yr old daughter has arms like mine.I can see how much it upsets and worries him if it were redhot outside he would wear a jumper to cover himself up rather than a t shirt.He looks frail and tierd and seems a shadow of himself its so upsetting.I try to make him laugh but its so hard at the moment its pulling us all down. Hopefully when he sees the ms specalist at hospital he might get to the bottom of it.He eats the same as he always did, he still smokes i think doctor will say something about that when he goes.He does like a drink of lager but no more than 6 cans per week.I told him off yesterday as he had not been putting his eye drops in from hospital he said whats the point i am going blind anyway theres nothing they can do for me.He has been suffering along time with his eyes been going hspital since 2000 when diagnosed as having uveitis last 2yrs central vision has gone in both eyes he can only use peripheral vision it was around 2 yrs ago when weight loss started aswell.He is registered as partially sighted and uses a white cane,he is waiting for a guide dog.I dont know what the future holds but we will get through this as a family life can be so cruel. xx julie

I completely agree with Tina. The underweight issue needs dealing with for its own sake, but you are not going to have much luck getting him to eat up with a good appetite if he is (a) anxious about stomach problems that make eating problematical and (b) worried that he has cancer. I think you have a much better chance of encouraging him to get back to a healthy weight once those obstacles are sorted out, and they are not going to get sorted out without good medical advice. Not everything that goes wrong is MS, and most things that do are easier to treat. And if his GP is rubbish, get a new one.

Good luck.

Alison

Hi, I shud go back to your gp and expain your husband’s syptoms stomach pain and weight loss, and ask to be referred to a gastroenterologist as I have crohns diseases and lost alot of weight before diagnosis and didn’t matter how much I ate I still kept losing weight, once I had a diagnosis and the right meds I soon put weight on and stomach settled. All best x

I will ring up his gp see if they had medical reports come through form hospital yet ? and make him an appointment if i carnt get him to go i will drag him there by his heels lol.Hes so stuburn sometimes ,perhaps now gps know he has ms they wont be so quick to fob him off and say they cannot understand it.He did have some blood work done there 2years ago when he first lost the weight. x julie

Hi Julie

Just another point of view. Before diagnosis, and before each of my relapses I have lost significant weight. Not quite as severe as your husband but at 5’3" I now weight 8st 6lb and my ribs and hips stick out. My size 10 clothes are now loose and I don’t like being this thin as I have not been this thin since I was a teenager and I’m now coming up to 48 but I eat like a horse. I’m even eating puddings after every meal. I do eat healthily, meat and two veg type meals and I’m adding pastry dishes and crisps and chocolate snacks in the attempt to add calories.

I’m usually constipated and I thought that having a slow digestive system would make me gain weight as the food sits in my digestive tract for so long I must have time to take more nutrients from it but it clearly doesn’t work that way. My nursing team at the hospital do track my weight but so far it hasn’t fallen far enough to cause alarm as I am at the bottom of the BMI index but haven’t fallen out of the healthy range for my height.

At the moment I’m on steroids for a relapse, and as they make me even hungrier I am hoping they can kick-start some weight gain. I’m usually reasonable mobile when I’m not relapsing and I have never really been overweight so this is just to let you know that some of us with MS do struggle with being underweight. Have you tried building hubby up with Complan or similar in addition to his normal meals? I remember using them when I was in my twenties and I had had the flu and lost a stone and struggled to put weight back on. It did work back then for me and as I’ve just remembered it , I may try it again now.

Take care, try not to worry too much as this will cause further health problems for both of you

Tracey x

We did think about crohns as thats also autoimmune related to ms, i suffer from stress related illnesses irritable bowel syndrome and endometriosis autoimmune myself and worrying about hubby isnt really helping me neither lol .We are a healthy family!

What a great idea i had not thought about complan i have heard of it before it helps to put weight on i will talk to him about it later.And i will ring the gp up for him he will moan at me but i will go in with him for support. x thanks julie

It may well be something like Crohns or IBS, my sister-in-law has inflammatory bowel disease. She used to be enormous and is half her size now. Does he have diarrhoea or bleeding from the rectum? I get constipation for most of the week which fills me with pain then the pain ups its game and I get diarrhoea which seems similar to IBS and I’m sure it’s down to the MS.

I am surprised that no-one seems to be investigating his weight loss. I feel so tiny at 8st 6 but he is so much taller than me at at 9st he must be skeletal. It must be awful for him. It really needs sorting. Have they done any allergy testing as he could be allergic to something like gluten. That can cause the tiredness and weight loss in itself. If I were you I would make a complete nuisance of myself at the GPs until something is done about it. This is not a time to sit back and be ignored. If he continue to lose weight like this he will become very ill indeed. He is dangerously underweight now through no fault of his own and that is dangerous as his body could turn on his internal organs for the nutrients it needs. You need to stress to the doctor how very worried you are - without your husband present if that is going to cause more problems with his moods and anxiety. Obviously he will need examining and tests, some of which won’t be very pleasant but if your husband suspects cancer he will be expecting some nasty tests anyway.

Take care and keep us updated

Tracey

It may well be something like Crohns or IBS, my sister-in-law has inflammatory bowel disease. She used to be enormous and is half her size now. Does he have diarrhoea or bleeding from the rectum? I get constipation for most of the week which fills me with pain then the pain ups its game and I get diarrhoea which seems similar to IBS and I’m sure it’s down to the MS.

I am surprised that no-one seems to be investigating his weight loss. I feel so tiny at 8st 6 but he is so much taller than me at at 9st he must be skeletal. It must be awful for him. It really needs sorting. Have they done any allergy testing as he could be allergic to something like gluten. That can cause the tiredness and weight loss in itself. If I were you I would make a complete nuisance of myself at the GPs until something is done about it. This is not a time to sit back and be ignored. If he continue to lose weight like this he will become very ill indeed. He is dangerously underweight now through no fault of his own and that is dangerous as his body could turn on his internal organs for the nutrients it needs. You need to stress to the doctor how very worried you are - without your husband present if that is going to cause more problems with his moods and anxiety. Obviously he will need examining and tests, some of which won’t be very pleasant but if your husband suspects cancer he will be expecting some nasty tests anyway.

Take care and keep us updated

Tracey

You definitely need to see someone specifically about the weight loss. Please also tell them about the sweating. It’s possible that they are related - make sure that whoever you see properly considers this. They could be something to do with MS, but they may point to something completely different.

Karen x

Has your husband had his thyroid checked? Before I was diagnosed with an over-active thyroid I lost a lot of weight, was hot and sweaty all the time and couldn’t keep still. I had a severe tremor and palpitations. Many of your husbands symptoms sound similar. Deb

Hi I was dx with thyroid problems in 1989 & ms in 2002. A number of msers have thyroid problems which can lead to weightless or weight gain. I eat healthily but at one point loss 3 stones in 1 month. I was down to 9 stones and am 6 foot 1 inch. A check for thyroid probs is straight forward through your GP. Follows others advice & seek GPs help. All the best Neil

I too have lost a lot of weight but not to that extent. I was dx in nov and lost over 2 stone since august. Im still having more tests to rule out other illnesses. Im with my nurse tues and ms dic 2 wks later. I feel my weight loss is down to anxiety in the main and also the illness itself. Still you need everything ruled out

Hi everyone my husband doctors gp at the start tested him for thyroid and HIV did a few more tests then said they couldnt find the cause they said maybe was he doing it himself which made us angry.They told us in the end they couldnt find the cause , it was the opthalmologist at hospital who sent him for the mri scan and then seen the white areas on his brain and refered him to neurologist he has now been refered by that neurologist to another neurologist at another hospital who specalises in ms.He is currently waiting, has an appointment first week april to see that neurologist he has no medication yet and tremors were only on right side of body now his left hand is starting to shake too, its worrying as its spreading and symptoms are getting worse . xx julie

[quote=“rizzo”]

You definitely need to see someone specifically about the weight loss. Please also tell them about the sweating. It’s possible that they are related - make sure that whoever you see properly considers this. They could be something to do with MS, but they may point to something completely different.

Karen x

[/quote] Thanks karen yes i will tell them as your right they could be connected he has appointment with neurologist first week april xx julie

Hi Julie - sorry not able to read all of your replies so don’t know if this has already been covered. However weight loss needs treatment. Firstly high protein high kcal diet I.e ignore all of healthy eating low fat low sugar products. Go for full fat full sugar foods e.g melt butter on veg, full fat milk, cream in mashed potato etc. If this doesn’t work as GP for supplement drinks. There are 3 different types - milkshake, fruit juice or yoghurt ones. Weekly weights to see if working. If not there are other products which could be tried Hope this helps Hugs Min xx