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?

definitely test for food allergies without delay

have they checked for excess acid?

or narrow of the escpohogus? please excuse my spelling. both things my brother has been treated for which cause weight loss, and feelings of sickness etc.

my mum used to get really bad pains in her stomach too and she had a duodenal ulcer and a hiatus hernia. She was also given a huge dose of antibiotics - something to do with H pylori or similar.

But definitely get her tested very soon for allergies. I went to a kinesiologist and found I was intolerant to dairy and all other sorts of food and Ive never felt better

mystery - I don't think food allergy has been considered, so, that's definitely worth asking her gp about (dh is seeing my mil's gp with her next week).

Misdee - will add those ideas to the list to talk to the gp about - I assume they should have been picked up during the endoscopies, but could have been missed.

My DD has a condition called achalasia. It is the failure to relax of the lower oesophageal sphincter (the valve at the top of the stomach/bottom of oesophagus which for about 40% of the populatin goes floppy towards middle age and lets too much acid out). It causes dysphagia for both solids and liquids i.e. can't swallow/keep down although might be able to sometimes.

It has an incidence of about 1 in 100,000 in adults, much less common in children, so not many doctors clued up on it.

Some children, particularly teenagers, who have been eventually diagnosed with this condition have been initially misdiagnosed as anorexic. Many patients are misdiagnosed as having reflux - my own daughter was until they believed me that the medication was having no effect.

Achalasia isn't usually picked up by endoscopy as the valve remains relaxed enough to allow the passage of the endoscopy tube into the stomach. Strictures and other narrowings of the osophagus can usually be picked up by endoscopy.

People with achalasia usually lose the petristalsis in their oesophgus too - that's the 'contractions' that move the food down towards the stomach.

The diagnosis of achalasia is by:

• barium swallow, which shows a 'bird's beak' shape

• manometry which reveals the lack of pressure down the oesohpagus - this is a tube inserted through the nose down into the stomach and withdrawn slowly.

There's a quiz here which has some helpful pictures.

Not sure if this is of any help but I couldn't not post it.

hi there. the thing that immediately sprung to my mind was crohns disease. It can affect any part of the digestive system. But, if she has had an endoscopy that really should have been picked up. SueW's post looks like it may well fit the puzzle. Just check if not the right diagnoses that they are sure it is not crohns in the upper GI tract. I hope she can be on the road to recovery soon.

TBH, I'm not convinced NHBA's MIL has achalasia - and haven't helped searching for more info with my lousy spelling like mis-spelling peristalsis!

Searching for info on dysphagia might come up with more ideas.

BTW, people with achalasia bring back undigested food when they are 'sick'. It's never got to the stomach and hasn't mixed with stomach acids so doesn't have a sicky smell. They may have food particles stuck and rotting in their oesophagus which can make their breath smell quite awful.

The mucous makes me think it couldn't just be straightforward dyshpagia. I may very well be wrong, but would have thought the endoscopy would have shown that up too.

Thanks so much for your ideas so far everyone. We need to get to the bottom of what's going on and it's got to the point where we need to explore all possibilities, as her weight is plummeting alarmingly.

DD does get lots of mucous which comes up with her 'sick'.

An endoscopy will sometimes show the undigested food in the 'e' (slang for oesophagus on achalasia yahoogroup as that is too long to type out often!) but just as often a pre-op starve will allow it time to clear. The acids and gases caused by the food rotting in the e can cause irritation which might look like acid damage.

The food gets stuck which can cause heart-attack like pain in the chest radiating out. Lots of people have experienced this at some stage of their life, perhaps when they've tried to stuff a sarnie or piece of cake down their neck too quickly and feel a hard lump inside their chest.

Sorry to bang on NHBA and DH. By now you prob have gut feeling whether any of this sounds familiar so I will go to bed!

Good luck in your search for the answer.

Can't help with a possible cause but really feel for you all. My dad got very ill about five years ago over a long period of time and ate less and less until he just didn't want to eat and felt sick all the time. We got him loads of fortifying drinks from the chemists and health food shops, I'm sorry, I can't remember what they are called, they come in small cartons and are full of vitamins and minerals etc. He was on these for months until he gradually built his appetite back up. Perhaps until you find the cause you could try these, they will help to keep her strength up.

Also there is a high calorie supplement which I think is only given20mls at a time (IIRC, a long time ago!) so perhaps she might be able to keep that down? I used to work on an upper gastro surgical ward you see.

Looked it up, it's called Calogen. it contains about 460 kcal per 100mls. so she could take small amounts a few times a day and might make a difference. it comes in different favours to try.

dh has calogen. because his heart is failing his body is burning up calories faster than before. he has to take 20ml a day. its helping keeping his weight a bit more stable. he lost 25% of his body weight in about a month.

Thanks Misdee! My memory serves me better than I expect!

my mum had something similar if not exactly the same... she had very bad nausea and lost over 1 strone in 2 weeks at one point as she could not eat -- she saw several gastroenterologists... all found nothing despite brain scans/MRIs/endosocpy etc etc . She was on high doses of losec that did nothing... she got very anxious and depressed which we found out was a side effect of the anti nausea tablets...

In the end, the best doctor she ever saw who took time to talk to her and spent ages with her, diagnosed that there was something wrong with a brain receptor responsible for the stomach... she has been put on a very low dose of anti-depressants (of all things!) and the transformation has been amazing -- she is now eating loads, has regained all her lost weight an is back to her usual loud confident self...

I would keep puhsing to see new doctors -- that is how we finally found our diagnosis... if you live in north west, I can let you know his name

Dh is very impressed by the speed of response from Mumsnet . Thankyou everyone.

The achalasia symptoms, which we've looked at in more detail, are amazingly similar to everything she is experiencing and she certainly fits the age profile of those who are more likely to suffer from it.

Other suggestions are also useful, because she can have tests for achalasia and if ruled out, other options come into play.

You are all brill .

I work on gastroenterology ward and would be v concerned with someone with that weight loss. Has she only had endoscopy as an investigation, sounds like she needs much more investigating. We recently treated someone with weight loss who has recovered after being treated for oral thrush and put on antidepressants. I think if you are not getting any luck with gp the you need to go the A+E and explain persistant sickness and weight loss. I think she needs to be admitted to hospital for a full work up. How tall is she, it would be useful to work out BMI.

Titch, she's 5ft 3in, haven't looked at the BMI tables but she's certainly way under what she would be and is heading towards going under 6 stone.

She has had various blood tests, 2 endoscopies, and a CT scan. Initially, the GP thought it was pancreatic cancer, but seems to have ruled this out.

The problem is, she is now extremely weak and unable to fend for herself - living alone, this is a big problem - something has to be done as a matter of urgency. I thought she would have been taken into hospital by now, for thorough investigations. She believes she's dying and no-one can find out the cause. She so much wants to get better - she has 3 small grandchildren who she adores, wants to spend time with and watch grow up.

My sil has decided it's a psychological problem and she needs to "buck her ideas up" - dh is very exasperated by this attitude because he knows how hard his Mum has tried to eat.

Lots of good ideas here, can I add hiatus hernia to the list of possibles?
Hope you can get some answers soon, how very distressing for you all.
Would just also say that is it possible to have an eating disorder and yet present as consciously wanting to try to eat? No experience in this area.
I just wondered if there was any chance AT ALL that your MIL is genuinely convincing you and herself that she does want to eat, but is actually living with a subconscious eating disorder?

It's possible Marina - we're not ruling it out and if so, it's obviously more complex than "bucking ideas up".

worked it out, think her BMI is 17, but maths not strong subject. Is she in any pain, and sorry if TMI but is the other end ok! I would have thought hiatus hernia would have been picked up on endoscopy. If it was my MIL I would seriously consider either going to GP and demanding an emergency referral to hospital for admission or present to a and e, but you will have to describe symptoms as above consistantly or they won't admit. Have certainly had people admitted to my ward for less, and started artificial feeding etc. Am going to work shortly, will ask the doc's on the ward for advice and post later on this evening.

sorry just read first message about pain.

Thanks Titch, will look out for your post.

Hi. I spoke to the Dr who is on the gastroenterology firm and does the clinics. I gave him your scenario and he said that if your MIL came into his clinic he would admit her. He said that anyone with a BMI of less than 17 should be admitted and thoroughly investigated as they are at risk of becoming very ill if not already so. Although he also said that one investigation would be pyschiatric assessment. But you have to remember that even if it does turn out to be mental health it is still an illness that needs treatment, not just 'buck your ideas up.' Hope this helps. Will continue to watch thread. I think if you don't have any luck with GP, bypass him and go straight to the hospital