My main problem is the recent development of severe gastroesophageal reflux and heartburn, which wakes me up at night and affects my sleep and quality of life. Is it MS related?
I've had persistent acid reflux for about a year now. I'm young, active, not overweight and have made every lifestyle modification possible. My lifestyle was already pretty healthy, so some of the changes have probably been detrimental to my general health (I've cut out long-distance running, for example, and acidic fruits). None of the five PPIs I've taken have made any difference, although famotidine does work a bit.
My GP suggested it could be because of gastroparesis (despite no other sytmptoms) and prescribed metoclopramide, but I wasn't willing to take that without a proper diagnosis given the severe side effect profile (which was never explained to me..!) At this point I'm starting to think it has to be MS related because I can't find any other explanation.
Hi Aoife, I think metaclopramide is awful! I can’t tolerate it due to tremor. The other “stomach churners” were equally as intolerable in my opinion, and some discontinued for safety. I hope you get your diagnosis. 🌷
Interesting - I am female and have secondary progressive MS. I'm not on DMTs and suffer acid reflux due to hiatus hernia, which is effectively managed with omeprazole. In the past couple of years I have had 3 episodes of severe pain between my shoulder blades radiating into my jaw. Each time I have had ended up in A&E with suspected heart attack - luckily all was all has been fine. The A&E doctors have said I mustn't ignore the pain and put it down to MS, because it just might not be. I suppose to just underlines the difficulties in diagnosing heart attack in women.
I’ve had gastroparesis for at least 10 years, managed by small meals throughout the day. The medications for it were, for me, intolerable. The most recent CT shows hiatal hernia. I do take a PPI and sleep raised. I’m not quite certain what all is related to MS, however, swallowing is becoming more difficult, and I note my voice has gotten increasingly raspier (I sound like a crow) and long conversations are very difficult. It’s hard to parse these things out, but I spoke with a gastroenterologist who indicated gastroparesis was by no means an uncommon complaint from pw/MS. Holiday eating is such a challenge! We’re almost done! Thanks Prof G, for your support for and of us. We are grateful to have you! Happy new year to all! 🌷
MS can cause oesophageal dysmotility and gastroparesis. I had a relapse which presented with both. I had severe GI symptoms which were investigated by gastro. I had a normal endoscopy and ultrasound. Oesophageal manometry confirmed the dysmotility. My MR brain at the time showed enlargement of an existing medullary lesion. After 5-6 weeks the symptoms improved. I was treated at the time with PPIs and H2 blockers, but neither worked and they made the gastroparesis symptoms worse as they delay gastric emptying. This may be rare, but it does occur in MS.
I had problems with food getting stuck in ny oesophagus shortly before my diagnosis, and have had severe reflux ever since. I've been on Omeprazole for nearly 2 years, and whilst I still feel daily gurgling in my throat at least it isn't acidic & painful any more. It was attributed to silent reflux causing damage, and this was why I initially had problems swallowing (and that this would improve within 4-6 weeks of starting Omeprazole...), but I have always been convinced that it was MS related.
Hi I was also on demythl fumarate for 6.5 years please note that gastrointestinal issues are one of the side affects of taking this medication. Ensure you take it with food and stay up right for at least 2 hours after taking it. I hope this gets better for you x
I agree that dimethyl fumarate causes GI symptoms, but GERD is not listed as being one of them. This patient seemed to tolerate the DMF in the beginning with GERD coming on later. This is very unusual to develop GI symptoms due to DMF as a delayed side effect.
"The most common adverse reactions are flushing (35%) and gastrointestinal events (i.e. diarrhoea (14%), nausea (12%), abdominal pain (10%), abdominal pain upper (10%)). Flushing and gastrointestinal events tend to begin early in the course of treatment (primarily during the first month) and in patients who experience flushing and gastrointestinal events, these events may continue to occur intermittently throughout treatment with Tecfidera. The most commonly reported adverse reactions leading to treatment discontinuation are flushing (3%) and gastrointestinal events (4%)."
I have recurrent hiccups. I get them in bouts of about 10-15 minutes, sometimes they stop for a few days and I have random singular ones. They’re not little ones you can quieten. Really loud. My GP says it MS but sent me for endoscopy. Surprise surprise it was totally fine. 14 months of hiccups think they’re here to stay. Not diet related, rarely drink, they are totally random. I think the person who did endoscopy suggested another test. Ive not heard, that was months ago.
Xmas is always the worst time for those susceptible to GERD due to eating and overeating the wrong foods and nice people bringing you presents like boxes of chocolates, clementines and liqueurs.
I find the worst foods that trigger GERD with me are :
- Chocolate
- Caffeine in coffee, tea, chocolate
-Spicy food
- Fatty food
-Tomatoes-
- Onions
- Pizzas with tomatoes, onions, cheese
- Citrus fruits
- Processed and fatty foods
I know that carbonated drinks, alcohol, some cheeses, bacon, ham and nicotine can also trigger GERD in some people. Also mint.
Some of these foods make it longer for the stomach to empty, keeping you awake at night and feeling very uncomfortabl as you can feel the stomach churning away. With me, this makes MS worse as you sleep so badly so feel wretched the next day.
With me (MS 50+ years) I find it is not just the 'sensation' of acid backing up. It is the ACTUAL acid backing up. This causes a nasty burning sensation in the oesophagus, which is not just a sensation of burning, but an ACTUAL burning of the oesophagus. It can lead to cancer of oesophagus and is scary so needs to be dealt with. The taste of this acid backflow in the mouth is truly nasty.
Personslly, I find that GERD can be managed yourself without needing a doctor or any medication by:
- Avoiding all trigger foods
- Only eating small, light, healthy meals,
- Leaving at least 3 hours between eating and sleeping.
- Taking a liqorice supplement
- Taking probiotics
By all means let's have more medicGal research, but any scientist is likely to find very quickly that certain foods and drinks trigger GERD, and that avoiding these and making some simple lifestyle modifications make GERD go away. The connection with MS May simply be that GERD affects sleep so you feel more fatigued and when you feel fatigued all symptoms are worse.
Probably already had MS for 35 yrs but undiagnosed when was admitted to hospital with possible stroke - facial nerve palsy. GP had started STEROIDS for "Bell's palsy". He had noticed that the signs were more of central pathology hence referral to hospital . There I was then also given CLOPIDOGREL and ASPIRIN in hospital after CT scan ruled out bleed but MRI unavailable because of COVID. Was not given PPI for protection until I asked for it (I am retired medical being aware of the need for it) then it wasn't given in my discharge medication. I was on this cocktail of gut unfriendly meds until result of MRI 5 weeks later pointed to MS. Stress featured too. I was aware of a hiatus hernia for 10 years from age of 50 as an incidental finding to other investigations. I have been much more symptomatic of GERD since then, So yes at least indirectly related to my MS.
I've a history of stomach and bowel issues (gallbladder removal, IBS). Persistent nausea finally led to a gastroscopy, when they discovered hiatus hernia and gastritis. I believe that my chronic stomach inflammation has been caused by decades of ibuprofen over use to manage headaches prior to diagnosis. Now I take omeprazole and probiotics, but it's difficult to manage, particularly with sluggish bowels and frequent trapped wind/bloating. Exercise and hydration helps.
The valve is malfunctioning because it needs acid to tighten 😝 spoonfull of vinegar does the job for me. I'd look into improving stomach acid improvement. I'd look into Hypochlorhydria but that's just me.
I had persistent acid reflux and actually didn’t relate it to specifically MS, but giving it consideration now, it may well have been. Was taking ridiculous amounts of antacids before going to my splendid GP. He rightly check for presence of Helicobacter Pylori which was eliminated as a cause and could possibly have developed into Chronic Gastritis > Gastric ulcer left untreated. H. Pylori undetected and prescription for Omeprazole 20mg daily ensued where it completely resolved.
I'm now 66 and have always had gut problems. My mother said that as a baby I had spindly arms and a distended belly like a malnourished infant in a refugee camp. As I grew older, I would gurgle if I ate and drank something too quickly and that was attributed to a hiatus hernia. Now, I don't think that assumption was completely correct. In my adolescent and adult years, I had many,many courses of antibiotics. I had symptoms that met the description of GERD but no medical person was interested. Generally, an appointment finished with the advice to 'come back in a couple of years if it hasn't cleared up'.
I don't think you can talk about reflux/ GERD etc without referencing the other end of digestion. I have lost track of the number of episodes of constipation I have had. If I went to a local doctor about it, the suggestion was either coloxyl with senna, some sort of fibre based product or some other similar treatment. Every time my constipation played up, so did my reflux.
In recent times, I reached the point of fecal overload. That meant explosions of mucky fluid that I could not predict or control. I went to my local doctor and he said "eat two prunes a day and see you in twenty years". Needless to say, that didn't work. Then he said "take Movicol", but that made no difference either.
In Australia, it is very difficult to get a referral to a specialist if the GP doesn't want to oblige. However, I contacted a gastroenterologist and managed to squeeze into an appointment. Her office people were reluctant to take me because it would cost me so much more without a referral. My response was "I don't care what it costs, I'll pay it."
The gastro had a team working for her. I did breath tests for SIBO, blood tests, poo tests and had CAT scans of my gut and pelvis. She was able to prove with those tests that I was not celiac ( I had wondered)and that I didn't have pathogenic bugs in my gut. However, she did find I had signs of an old case of pancreatitis and my prostrate was enlarged but not cancerous. All those tests could have been done by a local doctor but they had never ever been considered.
Then the gastro recommended I take an off the shelf product that was predominately slippery elm based. So, rather than draw water into my gut (like senna) or add fibre she opted to create a substitute for a mucous lining. What a difference!
Now, I pass large regular stools each day, never have GERD and now longer feel like my insides are swollen and full of gas. I eat more broadly as I am no longer worried about the effect of certain foods on my gut. More importantly, I am confident that I control my bowel.
So,I don't think you can talk about GERD without considering constipation as well. Despite 30 years of diagnosed MS, almost no one has ever considered my gut or bowel. If I could set the agenda for management of MS, I would insist that an MS patient sees a gastroenterologist every two years and has a scan of the gut. We have regular MRIs but that's often as meaningful as a postcard from your holidays. A scan of the gut and a review from a gastroenterologist is very worthwhile.
Interesting! SPMS, diagnosed 25 years ago. I'm not aware of digestive issues but have had a persistent dry(ish) cough for a couple of years, and sometimes a feeling of tightness and pain spreads from my chest up my throat, into my jaw and around my mouth. It lasts a few minutes then dissipates. I always wondered if it was indigestion, although it doesn't necessarily happen after meals. My GP prescribed Indocid for the cough and I tried it but stopped taking it, probably too soon, because it didn't seem to make sense. Now I might try it again.
I've had persistent acid reflux for about a year now. I'm young, active, not overweight and have made every lifestyle modification possible. My lifestyle was already pretty healthy, so some of the changes have probably been detrimental to my general health (I've cut out long-distance running, for example, and acidic fruits). None of the five PPIs I've taken have made any difference, although famotidine does work a bit.
My GP suggested it could be because of gastroparesis (despite no other sytmptoms) and prescribed metoclopramide, but I wasn't willing to take that without a proper diagnosis given the severe side effect profile (which was never explained to me..!) At this point I'm starting to think it has to be MS related because I can't find any other explanation.
Hi Aoife, I think metaclopramide is awful! I can’t tolerate it due to tremor. The other “stomach churners” were equally as intolerable in my opinion, and some discontinued for safety. I hope you get your diagnosis. 🌷
Have you been referred for endoscopy?
I was referred in July, but the waiting list is very long unfortunately.
Interesting - I am female and have secondary progressive MS. I'm not on DMTs and suffer acid reflux due to hiatus hernia, which is effectively managed with omeprazole. In the past couple of years I have had 3 episodes of severe pain between my shoulder blades radiating into my jaw. Each time I have had ended up in A&E with suspected heart attack - luckily all was all has been fine. The A&E doctors have said I mustn't ignore the pain and put it down to MS, because it just might not be. I suppose to just underlines the difficulties in diagnosing heart attack in women.
I’ve had gastroparesis for at least 10 years, managed by small meals throughout the day. The medications for it were, for me, intolerable. The most recent CT shows hiatal hernia. I do take a PPI and sleep raised. I’m not quite certain what all is related to MS, however, swallowing is becoming more difficult, and I note my voice has gotten increasingly raspier (I sound like a crow) and long conversations are very difficult. It’s hard to parse these things out, but I spoke with a gastroenterologist who indicated gastroparesis was by no means an uncommon complaint from pw/MS. Holiday eating is such a challenge! We’re almost done! Thanks Prof G, for your support for and of us. We are grateful to have you! Happy new year to all! 🌷
MS can cause oesophageal dysmotility and gastroparesis. I had a relapse which presented with both. I had severe GI symptoms which were investigated by gastro. I had a normal endoscopy and ultrasound. Oesophageal manometry confirmed the dysmotility. My MR brain at the time showed enlargement of an existing medullary lesion. After 5-6 weeks the symptoms improved. I was treated at the time with PPIs and H2 blockers, but neither worked and they made the gastroparesis symptoms worse as they delay gastric emptying. This may be rare, but it does occur in MS.
I had problems with food getting stuck in ny oesophagus shortly before my diagnosis, and have had severe reflux ever since. I've been on Omeprazole for nearly 2 years, and whilst I still feel daily gurgling in my throat at least it isn't acidic & painful any more. It was attributed to silent reflux causing damage, and this was why I initially had problems swallowing (and that this would improve within 4-6 weeks of starting Omeprazole...), but I have always been convinced that it was MS related.
Hi I was also on demythl fumarate for 6.5 years please note that gastrointestinal issues are one of the side affects of taking this medication. Ensure you take it with food and stay up right for at least 2 hours after taking it. I hope this gets better for you x
I agree that dimethyl fumarate causes GI symptoms, but GERD is not listed as being one of them. This patient seemed to tolerate the DMF in the beginning with GERD coming on later. This is very unusual to develop GI symptoms due to DMF as a delayed side effect.
Please see:
https://www.medicines.org.uk/emc/product/10096/smpc#about-medicine
"The most common adverse reactions are flushing (35%) and gastrointestinal events (i.e. diarrhoea (14%), nausea (12%), abdominal pain (10%), abdominal pain upper (10%)). Flushing and gastrointestinal events tend to begin early in the course of treatment (primarily during the first month) and in patients who experience flushing and gastrointestinal events, these events may continue to occur intermittently throughout treatment with Tecfidera. The most commonly reported adverse reactions leading to treatment discontinuation are flushing (3%) and gastrointestinal events (4%)."
I have recurrent hiccups. I get them in bouts of about 10-15 minutes, sometimes they stop for a few days and I have random singular ones. They’re not little ones you can quieten. Really loud. My GP says it MS but sent me for endoscopy. Surprise surprise it was totally fine. 14 months of hiccups think they’re here to stay. Not diet related, rarely drink, they are totally random. I think the person who did endoscopy suggested another test. Ive not heard, that was months ago.
You may find this MS-Selfie Newsletter helpful:
https://gavingiovannoni.substack.com/p/can-ms-cause-hiccups
Xmas is always the worst time for those susceptible to GERD due to eating and overeating the wrong foods and nice people bringing you presents like boxes of chocolates, clementines and liqueurs.
I find the worst foods that trigger GERD with me are :
- Chocolate
- Caffeine in coffee, tea, chocolate
-Spicy food
- Fatty food
-Tomatoes-
- Onions
- Pizzas with tomatoes, onions, cheese
- Citrus fruits
- Processed and fatty foods
I know that carbonated drinks, alcohol, some cheeses, bacon, ham and nicotine can also trigger GERD in some people. Also mint.
Some of these foods make it longer for the stomach to empty, keeping you awake at night and feeling very uncomfortabl as you can feel the stomach churning away. With me, this makes MS worse as you sleep so badly so feel wretched the next day.
With me (MS 50+ years) I find it is not just the 'sensation' of acid backing up. It is the ACTUAL acid backing up. This causes a nasty burning sensation in the oesophagus, which is not just a sensation of burning, but an ACTUAL burning of the oesophagus. It can lead to cancer of oesophagus and is scary so needs to be dealt with. The taste of this acid backflow in the mouth is truly nasty.
Personslly, I find that GERD can be managed yourself without needing a doctor or any medication by:
- Avoiding all trigger foods
- Only eating small, light, healthy meals,
- Leaving at least 3 hours between eating and sleeping.
- Taking a liqorice supplement
- Taking probiotics
By all means let's have more medicGal research, but any scientist is likely to find very quickly that certain foods and drinks trigger GERD, and that avoiding these and making some simple lifestyle modifications make GERD go away. The connection with MS May simply be that GERD affects sleep so you feel more fatigued and when you feel fatigued all symptoms are worse.
Probably already had MS for 35 yrs but undiagnosed when was admitted to hospital with possible stroke - facial nerve palsy. GP had started STEROIDS for "Bell's palsy". He had noticed that the signs were more of central pathology hence referral to hospital . There I was then also given CLOPIDOGREL and ASPIRIN in hospital after CT scan ruled out bleed but MRI unavailable because of COVID. Was not given PPI for protection until I asked for it (I am retired medical being aware of the need for it) then it wasn't given in my discharge medication. I was on this cocktail of gut unfriendly meds until result of MRI 5 weeks later pointed to MS. Stress featured too. I was aware of a hiatus hernia for 10 years from age of 50 as an incidental finding to other investigations. I have been much more symptomatic of GERD since then, So yes at least indirectly related to my MS.
I've a history of stomach and bowel issues (gallbladder removal, IBS). Persistent nausea finally led to a gastroscopy, when they discovered hiatus hernia and gastritis. I believe that my chronic stomach inflammation has been caused by decades of ibuprofen over use to manage headaches prior to diagnosis. Now I take omeprazole and probiotics, but it's difficult to manage, particularly with sluggish bowels and frequent trapped wind/bloating. Exercise and hydration helps.
Thanks, I must have got it wrong.
The valve is malfunctioning because it needs acid to tighten 😝 spoonfull of vinegar does the job for me. I'd look into improving stomach acid improvement. I'd look into Hypochlorhydria but that's just me.
I had persistent acid reflux and actually didn’t relate it to specifically MS, but giving it consideration now, it may well have been. Was taking ridiculous amounts of antacids before going to my splendid GP. He rightly check for presence of Helicobacter Pylori which was eliminated as a cause and could possibly have developed into Chronic Gastritis > Gastric ulcer left untreated. H. Pylori undetected and prescription for Omeprazole 20mg daily ensued where it completely resolved.
Should have seen him sooner.
I'm now 66 and have always had gut problems. My mother said that as a baby I had spindly arms and a distended belly like a malnourished infant in a refugee camp. As I grew older, I would gurgle if I ate and drank something too quickly and that was attributed to a hiatus hernia. Now, I don't think that assumption was completely correct. In my adolescent and adult years, I had many,many courses of antibiotics. I had symptoms that met the description of GERD but no medical person was interested. Generally, an appointment finished with the advice to 'come back in a couple of years if it hasn't cleared up'.
I don't think you can talk about reflux/ GERD etc without referencing the other end of digestion. I have lost track of the number of episodes of constipation I have had. If I went to a local doctor about it, the suggestion was either coloxyl with senna, some sort of fibre based product or some other similar treatment. Every time my constipation played up, so did my reflux.
In recent times, I reached the point of fecal overload. That meant explosions of mucky fluid that I could not predict or control. I went to my local doctor and he said "eat two prunes a day and see you in twenty years". Needless to say, that didn't work. Then he said "take Movicol", but that made no difference either.
In Australia, it is very difficult to get a referral to a specialist if the GP doesn't want to oblige. However, I contacted a gastroenterologist and managed to squeeze into an appointment. Her office people were reluctant to take me because it would cost me so much more without a referral. My response was "I don't care what it costs, I'll pay it."
The gastro had a team working for her. I did breath tests for SIBO, blood tests, poo tests and had CAT scans of my gut and pelvis. She was able to prove with those tests that I was not celiac ( I had wondered)and that I didn't have pathogenic bugs in my gut. However, she did find I had signs of an old case of pancreatitis and my prostrate was enlarged but not cancerous. All those tests could have been done by a local doctor but they had never ever been considered.
Then the gastro recommended I take an off the shelf product that was predominately slippery elm based. So, rather than draw water into my gut (like senna) or add fibre she opted to create a substitute for a mucous lining. What a difference!
Now, I pass large regular stools each day, never have GERD and now longer feel like my insides are swollen and full of gas. I eat more broadly as I am no longer worried about the effect of certain foods on my gut. More importantly, I am confident that I control my bowel.
So,I don't think you can talk about GERD without considering constipation as well. Despite 30 years of diagnosed MS, almost no one has ever considered my gut or bowel. If I could set the agenda for management of MS, I would insist that an MS patient sees a gastroenterologist every two years and has a scan of the gut. We have regular MRIs but that's often as meaningful as a postcard from your holidays. A scan of the gut and a review from a gastroenterologist is very worthwhile.
Interesting! SPMS, diagnosed 25 years ago. I'm not aware of digestive issues but have had a persistent dry(ish) cough for a couple of years, and sometimes a feeling of tightness and pain spreads from my chest up my throat, into my jaw and around my mouth. It lasts a few minutes then dissipates. I always wondered if it was indigestion, although it doesn't necessarily happen after meals. My GP prescribed Indocid for the cough and I tried it but stopped taking it, probably too soon, because it didn't seem to make sense. Now I might try it again.
Indocid is indomethacin a non-steroidal anti inflammatory or NSAID. You need to check why it was prescribed as it is not typically used for a cough.
Sleeping on the left side helps. If using PDE5s other meds with long half life maybe switch..