My MIL is really ill and we are stumped......any ideas?

[NeedHelpButAnonymously]

Sorry to change my name folks, I post a lot, but need to keep this anonymous. My dh has asked me to ask Mumsnet about his Mum as he is v v worried (as am I).

Here's what he says:

I'm very worried about my mum because she's very ill and weak, and the doctors can't seem to find out what's wrong with her, and prevent her from continuing to lose weight.

What happens is that if she doesn't eat when she needs to, then she gets a lot of pain in her stomach. It goes away after she's forced a little food down. She has a mucus in her mouth that makes all her food taste horrible, and no saliva. A few moments after she's eaten the food, she feels sick, and can't eat any more; then she salivates excessively and her eyes and nose stream. When she has one of these episodes, he hands shake. She's lost weight continuously for about two years now, and has gone from 10 stone 7lbs down to 6 stone 5lbs, and is now very weak.

When she had her last endoscopy a few months ago, they found a little bit of gastritis but nothing serious. She's taking 10mg a day of Losec, and she's tried 20mg a day but that makes her feel a lot worse. In the past she's had severe pancreatitis and had her gall bladder removed, but she says she doesn't feel like she's got pancreatitis now.

All the doctors have come up with so far is that all her blood tests are fine, they can't find any evidence of the usual reasons for long term weight loss (thyroid, diabetes, cancer...) and their best guess is that she isn't eating enough. That might well be the case, but having watched her have these episodes, I know she can't eat any more in the current circumstances; she eats small amounts, reasonably often, but if she eats too much (it doesn't take a lot of food for her to say it's too much) she's sick again. The only other suggestion we've had is that she's anorexic, but I know she's really trying to eat and isn't avoiding food as such - she genuinely finds it very difficult to force anything down.

The dietician suggested fortifying her food, and she tried this, but it seems to make it too rich for her to keep anything much down at all.

I don't know if anyone can help with any suggestions about what to ask her GP, or anything the doctor might not have considered, or has anyone experienced these symptoms and if so, what was/is the cause?

Titch - thank you .

I think she's reaching a crisis point with her weight ie she simply cannot afford to lose anymore and must be helped to regain some.

Will print out this thread for dh.

Hi there. Titch, you have picked on the weight issue which I think is even worse than you thought. My maths is truely awful so I looked at the BBC website. For a start the weight selecter didn't go as low as 6 stone . The lowest was 6 st 7. Calculating that with a height of 5'3 that gives a BMI of 16.15. 7 st gives a BMI around 17, so I think it's fair to say her weight is maybe just 16, but heading towards 15. She is very underweight.

Has she been admitted to a ward at all yet? I assumed before that she had been, but now I'm not so sure... I do think she needs to be. She needs a bit of an overhaul to say the least. They can experiment with different types of feeding and supplementation. They can feed directly into the tummy via the nose, not pleasant but not too terrible either. Would be interesting to see if she was able to keep that down. If not, other ways of feeding her are possible (via a drip in her neck). I would try and get her in, get them to build her up a bit and also do more investigations into what is the cause of this. I know I keep on about the mucous, but if it wasn't for that I would be pretty sure it was mainly psychological. It may well still be. Thats why the feeding via the nose would be interesting. It is a constant dripping into the stomach(sometimes with a 4 hr break to 'rest' the tummy, although not everywhere does this). She should not get too full with it, so it might not be too much to hope that she keeps it down...

They may not do this straight away though. They will probably want to review what she eats and how often, put her on food charts and try different forms of supplementation. Obviously the feeding via the nose is not a desirable long term solution. I think you should take her in to a and e and tell them she has had even worse abdominal pain and has been very sick overnight, is feeling lethargic. She should be admitted with that IMO. HTH sorry for the ramble.

I looked at a BMI calculator which put her at 14.4 .

Dh has printed off this thread, ready for seeing her gp next week.

I think it's crisis talks now tbh - ie get the gp to refer her as an emergency to hospital - she can do nothing for herself at home - we're also wondering how we can get some Home Care help for her whilst she is so weak and unable to fend for herself.

Why wait? I'm sure she would be admitted if you attended a and e. Your GP doesn't sound as though he has been a lot of help yet. The home help referral could be done easily by the relevant professionals who will see her and refer as appropriate during her in patient stay.

Yes - take her to a&e , start to get help immediately. I think you have waited tong enough and been very patient. I'm sure they will do something and it will stop you all worrying quite so much.

Good luck, my thoughts are with you. x

NHBA, Any news yet?

Just bumping again - did you go to the docs?

Hi - so sorry to hear about your mum.

Has the doctor considered any neurological causes? My dad also lost an incredible amount of weight also over a 2 year period(and had trouble eating and swallowing), but all the usual gastro tests showed up nothing. He went to countless other specialists who could not figure it out. I got fed up when the gp told him there was nothing wrong and he needed to "get out and smell the roses" (exact words!!). After that I went to every doctor's appointment with my dad. His doctor soon got annoyed with me, but when he did not come up with answers I challanged him and questioned how he could be so unconcerned about someone who was literally a walking skeleton! That at least made him refer my dad to a dietician (but that didn't get to the cause of things).

I took him to my own gp who booked a two-hour time-slot for him. She asked family members also to attend. Then she went through his entire history and asked us all about all the symptoms we could remember, starting as early back as we could remember. She was brilliant. She immediately knew what was wrong. Sadly, he had motor neurones disease. She referred us to one specialist (neurologist) who confirmed it. In this disease the muscles start to atrophy because the messages from the brain cannot get to the muscles (via the motor neurons which become unable to carry the signals for some unknown reason). His weight loss was because his brain could not get his stomache muscles to do their usual involantary movements required for digestion. The doctors had been puzzled because this disease usually affects function in the arms and legs first (and not the digestive muscles).

I do really pray that the health care professionals take your mum's situation seriously. Go with her to all doctor's appointments and do not accept it if they say they cannot help. Ask them who else can they refer you to. My dad was too weak to stand up for himself (and of a generation where one took as gospel whatever a doctor said, and don't want to be a "nuisance"). I would go with her and challenge any suggestion of anorexia. And for goodness sake change doctors if the current one is unconcerned. She should not be treated like "just another patient" - she is your mum and deserves to be treated with dignity and respect.

The thing that made me mad was that dad's initial gp would not admit that dad's case was beyond him. The gp who diagnosed dad worked in the SAME PRACTICE. If Dr Useless had just spoken with his colleague, she might have given him some suggestions that could have led to an earlier diagnosis. The woman gp that dad ended up going to was amazing, and treated him like he was her own father. Nothing was too much trouble for her.

Once dad was diagnosed, he could at least get the care he needed - and just knowing that people took him seriously and were concerned made a huge difference! (and also knowing that he was not going insane, which is what all the trips to his unconcerned gp made him feel like).

Good luck. I'll keep you in my thoughts and prayers. Remember to reassure your mum that she is special and just because the doctors can't figure out what is wrong, is not her fault. As well as medical care right now, she'll need a lot of support from you. And you'll need a lot of support from others - so rant or have a good cry on a friend's shoulder. Remember you can't take care of her if you dont' take care of you.

bump, hope you have found some help.

Sorry not to have updated earlier - dh went to the gp with my mil today (she lives about 3 hours drive from us).

She won't go to A&E directly, there are some things she is stubborn on and that's one of them unfortunately.

It wasn't very fruitful, gp referred her for another endoscopy - dh is usually very forthright in these situations but I think he's trying not to alarm his Mum, which I understand.

He's going to ring the gp tomorrow and and ask for an emergency referral to hospital.

I think it's time to change gp's too.

KiwiKate - thanks for your post - another possibility to consider; obviously we are hoping it is a less serious condition.

I also hope your MIL's condition is less serious.

The main thing though is to encourage her and not to be put off by the doctors (and to take care of yourselves because it is a terribly difficult time when someone you care for is ill, and particularly when no one seems to want to help)

I hope all goes well.

NHBA I do hope you can get someone to investigate this thoroughly very soon.

I don't know the age of your mil but is she possibly of the generation that just accepts whatever the doc. says and 'doesn't want to be a nuisance' You have to try and get her over this (my parents were like this when my mum was very ill. Now 8 yrs later my dad so regrets not pushing for more )Is there no way that you can get her to go for a second opinion?

Good luck it sounds a very distressing situation, made worse by the fact that you don't know whats really going on.

At least with referral there will be an opportunity to talk to someone and put forward other ideas. I don't know how it works with adults but you just don't get an endoscopy with children until you have been seen in clinic first; then you are referred to the endoscopy unit.

I hope you get to the bottom of it soon. It sounds like someone needs to insist she goes into hospital for a full investigation now.

It sounds like the is definitely a physiological problem (either in the digestive system or the brain functions controlling it), but it also sounds like it is being compounded by a psychological one too - the effects of eating are so horrible that it must be difficult to make yourself eat. It must be very frightening and if as you say she believes she is dying she is probably having to deal with depression too.

An update and a request for more help if poss .

My MIL is being tested for achalasia next week (barium meal).

She will also be seeing a consultant at the hospital, dh is going with her.

He is going to ask that:

a) she is also referred to a neurologist, just in case this is a neurological problem which is affecting her digestive system.

b) she is admitted to hospital, firstly to get nutrients into her and secondly to find out what else could be wrong. We know that a psychological assessment would be done, which is fine, but what other tests might be considered? Dh has realised that he needs to steer this - eg when he mentioned the possibility of achalasia to the gp, the gp said it was certainly a possibility, hence the referral for tests. So, the doctors aren't coming up with possibilities at the moment, but are willing to take on board sensible suggestions.

It's either psychological (we honestly doubt this) or something fairly unusual.

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Thanks for the update - I hope things get sorted out soon. It seems to be taking such a long time for them to take it seriously

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Hope it goes well and you get to the bottom of it.

DD had a barium on Wed as she has been having problems again It shows there is still a narrowing, post-surgery, but it isn't as bad as it was. Even I can see that. Tell your MIL the chocolate flavour's horrible; banana is better apparently! (I wonder if they offer flavours to adults?)

My grandpa was exactly like KiwiKate's dad but by the time they finally disgnosed him, he was in hospital and on his last legs and died a few days later. . So I hope it's not that (there's no cure for motor neurone disease) and that you get it sorted soon. Good luck.

have you considered Parkinson's as that causes difficulty swallowing and shakes? Its not quite like what you're describing but there are a number of similarities.

Really think its a case for a&e. I know that generation trust doctors too much but if she wants to see her grandchildren grow up .....might help to say there are drugs that would help if it is that - obviously best if they are in liquid form.

Thanks Tatt, I think it's something we need to add to the possibilities - she does shake a lot - find writing v v difficult now.

Part of the problem has been that she has underplayed how ill she is when visiting her gp - this became clear when dh talked to the gp on the phone last week.

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Just a last bump for any other ideas before dh goes with MIL to the hospital on Monday.

Thanks to everyone for your help so far - its very much appreciated

if she shakes a lot when she is isn't eating then I'm afraid Parkinson's is a distinct possibility. I have some experience of feeding problems with an elderly relative and we had to puree food as you would for babies. There can be a psychological component to this because obviously if food chokes you it kind of puts you off eating. However if the physical problem has a solution the psychological one improves.