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?

some advice on how to deal with swallowing problems from a parkinson's site, some of it stating the obvious....

"Here are some points on how to swallow safely.

Never swallow with your head tilted backwards. Lower your chin towards your chest to reduce the chance of food going down the wrong way.

Take small mouthfuls.

Take your time.

Cold drinks can help you swallow. Try a cold drink first thing in the morning or with a meal.
Don't empty your glass. Refill your glass when it's half full so you don't need to tilt your head backwards to drink. "

and some guidance on early symptoms

"Someone with established Parkinson's disease has a stiff style of walking, typically not swinging their arms as they walk. Their face is immobile and they can appear depressed on account of that alone. Often there is a tremor of one or other arm, or sometimes both arms. It is a particular feature of Parkinson's disease that this tremor happens while the individual is resting that limb (usually the hand) and goes as soon as they make a movement with the limb. Sufferers have a tendency to fall, are often constipated, may have difficulty swallowing and may, after several years, become demented. In its early stages Parkinson's disease can be very difficult to spot, as the sufferer may simply look a little slower and a little more tremulous than might be expected for their age."

and this site has a good list of other possibilities. Maybe print it out to discuss with the doctors.

www.patient.co.uk/showdoc/40024630/

At last!

My mil is being admitted to hospital tomorrow, for a range of tests and v importantly, artificial feeding.

Thanks all for your advice and help .

Hi, used to be titch1 now changed my name. (old one brought back school memories, not all good, but thats a whole new thread!!) Glad you seem to be making progress now. Hope things are ok at the hospital and you are now getting the investigations and treatment she needs!

NHBA, how has your MIL been getting along?

She's been in hospital for a week now, being artificially fed. Some tests are booked for this week - she's likely to be in until the end of the week. She will also have a psychiatric assessment while she is there.

She says she feels worse since she went in, but tbh I think it's more that she's realised how ill she really is.

Just felt I should update this thread as it may help others in the future.

Dh's Mum died on Saturday evening.

As I mentioned on my other thread, at 4pm on the Friday, dh had a row with her doctors because they would not take the condition she was in seriously. She knew by then she was dying and said, "why will these stupid people refuse to take any notice of me".

The hospital she was admitted to said her blood tests had been completely normal when she went in. It transpires they were not - sodium levels were low on admittance.

When she became unconscious last Friday and was transferred to the main regional hospital. At last, but too late, she finally was under the care of some sensible doctors who agreed she was very ill - their tests showed the low sodium had been a longer term problem and a symptom of something v serious underlying it.

They are fairly certain it was brain cancer - dh has agreed for her brain to be kept to do the tests to find out - it's important to know. Apparently if she'd had a head scan at any point over the last 18 months, the problem would likely have been identified. By the time the "good" doctors got to her she was so ill, it was agreed it would be too distressing for her to be put through it.

Dh accepts that she could not have got better with a diagnosis like this, but is extremely angry that she spent so long being virtually ignored, experiencing many distressing symptoms and constantly told to eat more when the poor woman couldn't. All the help and support that is offered to people (and their families) suffering cancer was denied her.

Many months ago, dh told her GP that he should be rethinking her treatment and consider neurological causes.

We think dh's Mum "fell foul" of the politics that is going on in her area with regard to healthcare. There's a big campaign going to keep the local "little" hospital open. She was only ever referred to it and the "generalist" consultant there. When dh insisted he refer her to a neurologist urgently, he sent along a rheumatologist. When the rheumatologist realised he shouldn't be there, he shrugged his shoulders, said "never mind" and rubbed his fingers together (referring to money).

Oh NHBA, really sorry to hear this. It's sad to lose a loved one in any circumstances but in cases like this it must be deeply upsetting for you and your dh.

I'm not able to offer you any advice but I suspect there are a lot of mumsnetters who would be able point you in the right direction if you wish to take further the treatment of your MIL.

All the best to you and your dh at this time.

Sorry to hear about your mil, my thoughts are with you and your family.

Thanks for updating us.

I am sorry for your MIL and for you all to have to witness this. At least you know she is no longer suffering.

oh NHBA I am so so sorry. Thinking of you and your family.

NHBA - I am so sorry to hear your news.

You and your husband must be devastated.

Love
dejags

Oh NHBA, I posted on the other thread, but just want to say how sorry I am again. FWIW, I think it is the GP who should accept the brunt of the responsibilty here. Weight loss that dramatic, whatever the cause needed to be treated. What a shame her final days were spent in this way, when diagnoses could have afforded her much better care. I hope my previous posts don't sound flippant now in reponse to this, I did not realise things were quite so desperate. It's a shame her doctors didn't either. Very brave of you for agreeing to the testing, I agree about needing to know, not an easy decision though. I hope it gives you some answers. Hugs to you both again.

Thanks for your kind words everyone.

Flossam, I agree about the GP. In a little while, I think dh will think about how he wants to make sure lessons are learned from his Mum's death.

That's very sad news, NHBA. It's bad enough when you know everything has been done for a relative so this must be even worse.

i'm so sorry NHBA. i really feel that your MIL wasnt treated in the way she should've been. its totally outragous and disgusting that she suffered like this.

love and condolances to your family.

xx

Another update on this as finally we know what was wrong with my MIL. An extended post mortem (insisted upon by dh) has revealed she had motor neurone disease.

It is of course terminal, but dh has spoken to the motor neurone society/association and it's clear that she was not in the very late stages of the illness and with good care could have had another couple of years, with some reasonable quality of life. She had used a huge chunk of her savings to pay for private nursing care in the event of something like this happening, but without a diagnoses, was unable to activate the insurance and so had a terrible time until her death, not even knowing what was happening to her .

Dh asked for her to be referred to a neurologist more than once, the last occasion a few days before her death, when instead she was seen by a rheumatologist!!!????

Dh had to take the decision not to rescusitate too - given that in the absence of a diagnosis, the hospital guessed it might be terminal cancer and at best a few weeks to live. If he had known it was motor neurone, the decision may have been very different given that she may have been able to live considerably longer with her symptoms appropriately managed.

After reading this thread, dh asked the hospital to consider motor neurone disease - his idea was dismissed out of hand and he was told there was nothing physically wrong with her.

We accept that her illness was a rare one and not necessarily easily diagnosed, but how difficult is it to refer someone to a neurologist???

I was not online when you posted about your MIL's death, NHBA, from the look of the dates. I am really very, very sorry you lost her, and in such upsetting and unnecessary circumstances.
Sadly I would not describe MND as so rare as all that the doctors involved in her "care" should be bitterly ashamed of themselves.

So sorry to hear this. TBh I don't really know what else to say, I just feel sad and angry for you all, especially your poor MIL.

Thanks for your messages.

The post mortem report states that she had motor neurone disease and her clinical history "fits" with the findings. It also states that motor neurone disease was suggested as a possible diagnosis on her admission to hospital. Indeed it was - not by any doctor I hasten to add, but by dh after reading the helpful replies to this thread!

He has started a formal complaint procedure about her care, not to seek apologies (although these are already being received), but to ensure those involved reflect fully on what happened.

It might help someone else in the future.

So sorry to hear this NHBA.