Is acid reflux a 'normal' symptom of MS?

Everyday living
1

Warning - contains graphic detail!!

I went to see a GP yesterday. I wasn’t expecting much of an outcome to be honest, as I never get much joy from my surgery. We have a steady turnover of different GPs so the only long-standing one is always fully booked and I don’t get much joy from him either! Yesterday I saw yet another locum.

I wanted to discuss the problems I have been having with severe stomach acid. I already take lansoprazole 15mg daily to help combat this problem but in the last 2 months I have been woken a couple of times at 3am ish with acid in my throat and as soon as I sit up I begin vomiting. I have either barely made it to the bathroom (just next door) or haven’t made it and once I had to vomit in my waste basket which thankfully is next to the bed. I then have severe diarrhoea which seems to be due to the severe stomach acid and is basically the same food going straight through and it burns (sorry!). I have been noting down my trigger foods, for example pasta with chunky tomato sauce or raspberries, and avoiding them since.

Unfortunately the last time this happened I was also a bit constipated so I ended up wide awake for over 2 hours with horrendous pains in my stomach and very severe bloating (I looked like I was 6 months pregnant) until the diarrhoea managed to clear the blockage and all hell was let loose. In the 2 hours before this happened I was trying to drink water as I knew I had lost fluids but was still heaving and bringing up bile. The nausea and diarrhoea then persisted for a couple of days on each occasion making it very difficult to know what to eat :frowning:

After this last bout I ended up with a 4 day migraine because I had been awake for so long with the stomach pains. As this was now really affecting daily life I checked with my hospital to be sure this wasn’t a side effect of Gilenya, which can cause stomach problems, but my consultant was satisfied that it wasn’t so they said I should get it checked by my doctor. The consultant and my nurse also agreed it sounded quite horrific.

The locum listened patiently yesterday while I relayed all that had been happening. His verdict was that digestive problems are common in MS and it could be that or it could be IBS and I have to note which foods cause it and avoid them. I did point out that I rely on fruit to clear the constipation and ready made pasta sauces due to the MS fatigue so he told me I will have to try to balance that against my stomach problems! He did prescribe me some Gaviscon as I wasn’t sure if I could take OTC meds with lansoprazole. He also prescribed some anti diarrhoea med in case it happened again and recommended that I keep some laxatives in the house and balance when to take which. I’m not sure I like the idea of taking laxatives and anti diarrhoea meds alternately …

I’ve looked on here and on the MS Trust website and I cannot see anything about acid reflux being a common symptom of MS. I am well aware that the constipation is part and parcel of the MS which is what I told the GP. In fact my bowel was regular as clockwork until my big relapse which led to dx 5 years ago. (I was numb from the waist down and could barely walk, since then my bowels have been ‘temperamental’ but I mostly manage it by diet alone.)

Much as I didn’t want any invasive procedures I do wish that the GP had done some more investigation to rule out anything more serious.

Does anyone else suffer from severe stomach acid and do you have any tips for me? I’m already keeping a food diary and I’ve found a couple of quick pasta sauces I can make for myself that don’t involve tomatoes …

If you’ve got this far without falling asleep, many thanks

Tracey xx

2

Hi Tracey,

I had severe reflux in 06. I’d start coughing and couldn’t stop and so was sent to have an examination at the hospital and my stoma - the bit that holds the stomach acids in, had been weakened by a long relapse.

I do take Omeprazole but it doesn’t always do the trick. You can take Ranitidine as well as it’s a type of antihistamine and not contraindicated with Omeprazole/lansoprazole. Gaviscon helps a lot as well.

This was the year that I stopped eating gluten and the pain went away and rarely returns. Keeping a food diary helps a lot. I know that I can’t eat oats or pulses as they hurt!

I sleep propped up on a wedge and rarely eat after 4 in the afternoon.

I hope this helps a bit,

K

xx

3

Tracey, That all sounds horrendous - and certainly not ‘normal’. l suffer with diarrhoea - with only a 3 second warning -and have to take Codeine Phosphate and Loperamide [lmodium]. l am much better if l do not eat any grain - ok with nuts/seeds. But do be aware that Lansoprozale and Omeprazole meds do delete vitamin b12 - which we desperately need.

l do take pro-biotics - and also eat natural yoghurt.

Do hope you find something to relieve this problem - we have enough to put up with.

4

I’ve got both digestive problems and a constant cough, but it’s hard to say what’s related. I’m not sure the cough is, by itself, as I’ve always been prone to it since childhood, and other members of the family (who don’t have MS) are similarly afflicted, so looks like it’s a genetic thing. It’s similar to allergies, but with those, the allergic person usually knows or at least suspects what they’re allergic to. It’s not like that with me - it’s not associated with anything in particular, or even a time of year (as with hayfever).

The gastric stuff I would say is different, and has only been a problem since I began to feel unwell - although even that could be quite a time, as at my last consultation, we estimated 24 years! But NOT my whole life, in contrast with the runny nose and random coughing fits.

However, definitely ALL of it worse since diagnosis, in my opinion, however, that still might not mean it has anything to do with MS. It could be: (a) I’m more conscious of health issues, since being diagnosed - every little thing might be MS. (b) The problem is not MS itself, but a reaction to the increasing numbers of meds I’m taking for symptom relief - which obviously I didn’t when I was undiagnosed, or (c) similar to greater awareness, but slightly different - I may have lower tolerance for health issues now, because my baseline health is worse. A runny nose and proneness to coughing or occasional heartburn may seem like no big deal, when you’re otherwise fit as a fiddle, but once you have MS, become: “Oh no, yet another damn thing!”

I’ve been on omeprazole before. My throat looks sore, although it doesn’t feel as sore as it looks, but it doesn’t feel right, and I have a hoarse voice most of the time. If I’m on the phone for any length of time, my voice just conks out. Since I finished work, it’s usually only my mother keeps me on the phone that long, and she’s aware of the problem (and has similar). So she’s OK if I say: “Mum, sorry, got to go - my throat!”

None of which answers your question, Tracey, does it? So sorry. I think one of the reasons it’s so hard to determine whether it’s MS-related is non-specific coughing and problems like heartburn or bloating are among the most common things people go to the doctor’s about, so you can never tell if you’re one of the large number of people that would have had it anyway.

I’m just about to start a coughing fit, as if even typing about it brought it on! I realise I haven’t taken an antihistamine - another recent addition to ever-lengthening list of repeat prescriptions. I’m still not eligible for free prescriptions, despite living on savings, but thank goodness for pre-pay, at least, which means you never pay any more, regardless how many new things get added!

Tina

x

5

Thanks for this. I haven’t noticed that gluten makes a difference but I’ll give it a go and see what happens. I’ll perhaps wait until the summer hols purely because I bring sandwiches to work for ease. If I have to get inventive with lunches I’d have to get up a bit earlier in the mornings and that’s not going to happen in the last few weeks of term …

Tracey x

6

I do have B12 injections every 12 weeks, although I note that lately they’ve been trying to fob me off with a date 3 months in advance thus saving a couple of weeks. I’m not fooled so I note my diary for 12 weeks and ring and book it anyway. It’s all about cost …

I did try a probiotic yoghurt drink the other week but it came straight back up. It’s okay when things have settled down but not when I’m in the midst of an attack. The GP did say I can double up on the lansoprazole when it’s flaring up so I’ll give that a try next time too.

I will mention it again at my next MS clinic as I’m sure this isn’t a normal part of MS.

He asked if I was on injections and I said I had been but they stopped working so I was now on fingolimod daily (this is all on my records if he had bothered to look!) This GP also has a friend with MS and he told me how this friend was virtually paralysed and in a wheelchair a couple of years ago but is now on ‘daily injections’ and is better! I just sighed because even a GP doesn’t understand the nature of RRMS. I don’t even know why I bother going there …

Tracey x

7

Hi Tina

You’ve just reminded me of something. I told the GP I hadn’t had digestive problems before MS but actually when I was in my twenties I used to wake up every morning feeling sick and bring up bile. I could never manage breakfast because I always felt nauseous. The more I think about, the more I had some very odd symptoms in my twenties that are similar to things which happen now but they never worried me enough to see a GP (and our surgery has always been useless so I gave up going).

I always had a hoarse throat too which I put down to being asthmatic but since I’ve been on lansoprazole I haven’t had it. I guess that means it was due to acid reflux and I never knew …

I also have random allergies but have no idea what they are. I take a daily nasal spray as I have perennial rhinitis. I’m actually better in the summer months but in autumn I’m affected much more. My eldest sister once worked at a mushroom farm but had to leave after six weeks as she couldn’t breathe. Turns out she was affected by the spores. I also once had a really bad reaction to a wasp sting but have been stung since and didn’t react.

Luckily (or not) I’m on a low pay so I’m on Tax Credits and my prescriptions are free so I don’t mind having three pages of repeat prescriptions. I often joke that if I wasn’t on a low pay I couldn’t afford to be so unwell, ha ha!

I always expect my GP to be fairly dismissive of whatever is ailing me. You can imagine how scared I was 5 years ago when I went to see a GP with slurred speech expecting to be told there was a perfectly normal explanation and to be told I needed an urgent brain scan!!! It’s no wonder I imagined I was going to die …

Tracey xx

8

yup for me on Omeprazole at night would wake up about to throw up and then be awake for a few hours i think if it wasnt for my Domperidone id of been ill by now but the 2 work well together at least at the time of typing they do, ive had it for as long as i can remember to the extent there is a bowl next to our bed permantly and has been for years , i tend now to not eat so late and avoid the pastry on pork pies etc as i find they give me acid and chest pains so bad but i love pork pies especially the pickle 1’s so its a fight not to grab them :slight_smile: hope yours eases soon and you get good treatment for it

respect sheep

9

I get acid reflux Tracey, I think a lot of it’s to do with all the meds I’m on. GP prescribes me lanspraozole 30mg daily in two separate 15mg doses…I take second one at bedtime. This regime works for me. Why not discuss increasing dose with your GP. X

10

And I am another one who gets acid reflux. It usually manifests itself as “heartburn”, and an antacid will often sort it out.
I have read in the past that it can be due to a failure of the nerves controlling the muscles that stop digestive acid from getting in the wrong place - but I cannot find the reference. A pity, because the suggestion was that few (if any) GPs would associate this with MS, but would immediately look for a digestive system disorder.

No particular food seems to be the trigger, but anything that is acid in itself can do it. Often, this is one of the nice things like raspberries, or rose wine, or a rich sauce on the pasta
Now it can be almost any red wine as well

Geoff

11

Hi Tracey,

Oh, I well remember the: “OMG I’m gonna die!” thing. With me, strangely enough, it was not when I was first sent for a brain scan - worrying though that was, but some way into the diagnostic process, when it was already looking “almost certain” I had MS, but then just a single blood test came back abnormal. My neuro, who had obviously not thought it through, helpfully wrote down for me on a piece of paper the name of the condition this result would suggest, and encouraged me to go away and Google!

When I did, I was horrified to discover life expectancy without treatment was about six months! Not only was I not being treated, but none was yet on the cards, so the clock was ticking. Luckily, my more rational self reflected on the fact I’d already had symptoms going back years, so the chances of my still being here, and working, and walking around, if it was anything that usually killed in six months, were pretty remote. As I’d not even had an emergency hospital admission, or any time off work, I convinced myself whatever it was couldn’t possibly be that.

And so it turned out. They repeated the abnormal test, couldn’t replicate the result, and it wasn’t the type of thing that could spontaneously resolve itself, so the first result must have been an anomaly. I later found out that particular test is regarded as unreliable, as it is extremely sensitive to lab contamination, and generates a high proportion of false positives. If only I’d known that BEFORE being invited to go off and look it up, with the result I thought I was dealing with a killer.

As an aside, another thing I forgot to mention is that since diagnosis, I’ve had several episodes of violent sickness - about one or two a year. They usually last no more than about 48 hours, so could be an ordinary tummy bug. However, it seems unlikely I would suddenly go from one every twenty years or so (my previous average in adult life), to one or two per year. So I don’t think it’s an infection. The episodes, when they occur, are quite severe - I can’t keep down water. I do not know if it’s an MS thing, or a reaction to drugs. Codeine makes me feel slightly nauseous and hungover, yet remains the most effective painkiller available to me, so I’ve always found use of it quite a finely-balanced compromise. Occasionally, my body seems to take the decision it won’t accept codeine any more, and is going to enforce a drugs holiday, by making me throw them all up.

I could be quite wrong, of course, and these episodes are some atypical form of relapse. But I intuitively feel it’s the codeine. I don’t know what triggers the sudden switch from: “just tolerated”, to: “You are not having any more of these!”

Tina

x

12

Geoff,

I have noticed it with red wine too - and coffee. Though oddly, more so with cheap and cheerful instant coffee than with the strong and more expensive filter coffee, which I love. Despite peppermint being recommended for digestive complaints, I’ve found I can’t have that any more. A polo mint is OK, but I’ve had to throw out a whole packet of peppermint tea, and some peppermint oil capsules, because they caused so much burning.

I’ve also read it may be a CNS thing to do with nerve impulses not closing the sphincter properly, allowing acid to leak back up. But no idea of the citation, and not about to start looking.

I suppose, in a way, it doesn’t really matter, because I’m not sure the treatment would be any different whether it’s neurological or not.

Tina

13

Hi Tracey.

Have you tried giving up Lactose? Milk in tea / coffee etc? To see if you have an intolerance to it?
This intolerance can cause severe acid reflux!
I have real evidence that this works (myself included) Won’t go into the borring details here, you must suffering sensory
overload with all this information!

Take Care.

Steve.

14

We are talking about the failing of the nervous control of yet another sphincter, but at the top of the stomach rather than controlling the bladder or the bowel. So I think it plausible that it could be attributed to MS. Although I am not diagnosed, in my own case I also note recurrent phases when I have it often over perhaps a couple of months before it goes away for rather longer periods, pehaps a year or more.

15

Apart from a discussion on this forum in 2012, I did turn this one up:p

http://www.mult-sclerosis.org/gastroesophagealreflux.html

the foods that may be triggers is interesting.

Geoff

16

[quote=“DoctorGeoff”]

And I am another one who gets acid reflux. It usually manifests itself as “heartburn”, and an antacid will often sort it out.
I have read in the past that it can be due to a failure of the nerves controlling the muscles that stop digestive acid from getting in the wrong place - but I cannot find the reference. A pity, because the suggestion was that few (if any) GPs would associate this with MS, but would immediately look for a digestive system disorder.

No particular food seems to be the trigger, but anything that is acid in itself can do it. Often, this is one of the nice things like raspberries, or rose wine, or a rich sauce on the pasta
Now it can be almost any red wine as well

Geoff

[/quote] Thank you, that’s put my mind at ease, knowing there is an explanation and a link to MS because I couldn’t find one. For me, the triggers seem to be anything anything acidic and any alcohol :'(. I’ve seen your link on a later post and that was very interesting. I had already looked up the common trigger foods and had been avoiding them since the last sleepless night. It’s interesting that mint is on there since many people suck a mint after a meal believing it helps … I had already discovered, the hard way, that it exacerbates the problem! Tracey x

17

That makes sense so thank you for that. I wonder why there is nothing about it on this website or on the MS Trust’s? As I said to Tina, I did have a bad spell of it in my twenties which was self resolving as were many other odd symptoms at the time. The more I think about it, the more it seems likely that something odd was going on back then. If they were indeed all neurological symptoms then it means I am doing very well in the grand scheme of things :slight_smile:

Tracey

18

Hi Steve

Thanks for the thought but I’m fairly sure I’m not intolerant to lactose. I have a friend who is and her reaction is quite severe and it’s every time she has lactose, not just randomly. At the moment I’m not good with rich, creamy sauces but I prefer low fat milk and I have the tiniest drop of milk in tea anyway. I do have a weakness for cheese but I’m giving that a miss at the moment.

Again, it’s maybe something I’ll experiment with in the school hols when I can give a bit more thought to what I am preparing. During the working week it’s a case of grab something and go to work, have a nap, prepare a quick and easy evening meal and work again from home. If only I had an on call chef …

Tracey x

19

Tina,

I had a lot of upset stomach upsets in winter 2012/13 and some of them were definitely stomach bugs but some were just me! I work in a school so the stomach bug just goes round and round … However last winter I didn’t have any sudden onset vomiting. Only recently with the stomach acid.

I have a real problem with painkillers now. I could never stomach paracetomol - as soon as they hit my stomach they came straight back up - always did! I used to use ibuprofen until the acid reflux became a problem and they now cause really bad stomach pains (that may have been part of the problem as I used them a lot when I was first on Rebif and had the flu type side effects). My GP prescribed co-codamol which I could tolerate at first but as it contains paracetomol it also now gives me dreadful stomach ache. Now, when I get a migraine I just rough it out as nothing ever eases the pain anyway. Thankfully I take topirimate daily which has brought them down to a severe headache rather than the full blown thing.

Tracey x

20

The interesting thing for me is the citrus fruit. I noticed that eating clementines daily wasn’t giving me acid reflux but was giving me diarrhoea. I can eat one every other day but not every day. I can’t eat large oranges at all because they cause my tongue to blister and crack. I do have a problem with acidic foods …

Tracey x