Hi 
Just curious if this has ever happened to anyone with MS. I one time had my stomach, and when I say stomach I mean it felt like my actual stomach and not the abdominal area was tightening on and off and it was painful. It lasted about five days. Oh and I also get muscle twitches or like the muscles jump around, and those aren’t painful and those ones are felt under my right rib in my abdominal area, also those last days.
Thanks.
Jenny
Hi Jenny,
I wouldn’t like to say it couldn’t happen, as your stomach is muscular, and theoretically any muscle can be affected, if it’s getting wrong signals from the brain. However, it’s not something I’ve ever experienced personally, and not something I’ve seen reported often on these boards.
I do get some digestive problems, such as rumbling stomach and a lot of acid, but that might well be a side effect of the many different meds I take, and nothing to do with the underlying MS at all. Definitely nothing I’d describe as a stomach spasm.
A lot of people with MS do experience something that’s colloquially known as the “MS Hug” - which is a spasm of the tiny muscles between the ribs - which can cause pain, pressure, and (sometimes) a sensation of not being able to breathe. However, you seem quite specific that it’s your stomach, and not chest/abdomen/ribs.
You don’t say where you are in your investigations, or if, indeed, you have been diagnosed. Have you reported this symptom, as it may have some bearing on whether or not it’s likely to be MS, and there could be other causes of stomach trouble, that need checking out.
Tina
Thanks Tina.
I am currently awaiting on an Mri, so no diagnosis. I have read some posts where people talk about stomach spasms, however it sounds more like they are saying its an abdominal thing vs the actual tummy.
Jenny
Hi again,
Of course, if you read many different accounts of pain, it’s notoriously difficult to tell whether all, or even any of them, are talking about the same thing. People both feel and describe pain in many different ways.
However, my instinct, like yours, is that actual stomach pain is not what most MSers are talking about when we talk about spasms, or even “the hug”. I don’t think stomach pain is a typical symptom, although constipation or waterwork issues are relatively common, which could in turn cause abdominal pain.
As you are still at a relatively early stage in investigations, and it’s by no means clear you have MS at all (hopefully, you won’t), please don’t edit out any symptoms when you are talking to your GP or neuro, as anything could be a clue. This stomach pain might not have been neurological at all, but it could be the missing piece of the jigsaw, that enables someone to say: “Aha, I have a suspicion what this might be!”
Then again, if it only happened the once, and possibly quite some time ago, it might not provide much of a lead now (presumably if there were anything seriously the matter with your digestive system itself, it wouldn’t just go away again). But I think the safest course is always mention it, and let the experts decide what’s relevant. They might say: “Oh no, I’m sure that would have nothing to do with it!” - In which case, fine - you’re not an idiot for mentioning it. Much better to mention something they don’t think is relevant than to shut up about something that might have been.
With hindsight, I didn’t mention a few things that I thought were too random and/or trivial to be connected (not that I’m suggesting your stomach pain was trivial - it sounds horrible!)
I’m since sure they were connected, and that if I’d come right out and said them, my GP’s suspicion of a slipped disc could have been ruled out immediately. But I thought: “Hmmm, well, it was mild, and I might have imagined it really, and it’s probably unconnected…” - so I didn’t say anything!
Moral: always report anything, however random or unconnected it seems. If it’s irrelevant, you will be told (and not always tactfully!), but think of it like a police investigation - never withhold anything that might be relevant, even if it seems a bit odd or far-fetched.
Tina
x
Thank you so much. I appreciate you taking the time to respond. I had a horrible experience with the neuro I waited a year to see. I wrote up a list of all of these weird things for my GP and he sent me to the neuro, and I wrote up another list for the neuro, and when I went in he said, “I think you have mistaken me for a family doctor. I don’t do lists. I only deal with one issue at a time.” I wonder how he can do his job with an attitude like that. I think he decided from the beginning that he wouldn’t believe anything I told him, because he told me he thought I was just tired and that if I slept better everything would stop. Thankfully he did order an mri, but my experience was awful. I will attach the link to my other post about my experience, if you are interested. Frustrated - New diagnosis and before diagnosis - MS Society UK | Forum
Anyway, thank you so much
Jenny <3
Ah yes, I remember you from that post now! Sorry I didn’t recognize you - you have a pretty distinctive username, as well.
It’s water under the bridge now, and, others said at the time, you did get the right outcome anyway (referral for MRI), but for future reference, lists are all very well, but save them as a memory jogger for you. I’m not sure whether you actually handed it over to him or not, but if you did, you have paved the way for exactly the response you got - instead of a two-way interaction (which is the point of going), the list is quickly shelved.
To get the most out of a list, assume it’s for you, not him. If he would like a copy at the end, that’s fine, but don’t hand it over straight away, allowing him brush it aside and change the subject.
Most neurologists will be short of time (that, at least, is probably not his fault), so it’s always a good idea to organise your list in order of the most serious and pressing problems - the biggies at the top. That way, if you run out of time, or get stressed and forget something, it won’t be one of the huge things you’re really worried about. Save the “minor niggles” or very occasional, shortlived things for the bottom, so it won’t matter as much if you don’t get to them.
Try to group similar symptoms together, so if you have, say, tingling, in a foot, a hand, and a thigh, don’t list it as three separate things, just put the bullet point: “Tingling - several places” - you could add in brackets: foot, hand, thigh. This makes your list more manageable, for both you and him.
If you introduce the broad subject, “Tingling”, it’s quite likely his next question will be: “OK, where’s it been tingling?”, so you you will cover all examples of that naturally, without it seeming like three separate topics.
Same could go for weakness, pain, vision problems etc. - organise similar things into broad categories. It makes the list smaller, and he won’t be thinking: “OMG, we’ll be here 'til next Tuesday, and my next patient’s due in ten minutes!”
It’s a good idea to be able to give some impression of approximately when or how often things occurred, and how long they lasted, but it doesn’t have to be minute detail. E.g. “Around Christmas, for about a week”, should be fine. You don’t need to tell him: “On Tuesday, at about 10 a.m, my little finger was tingling, and then it went away, but I noticed it again about 2:00.” That is too much detail. It’s enough to say something like: “Sometimes I get tingly fingers: it’s not continual, but it can happen a couple of times a day.” You won’t be expected to produce a log - estimated frequency is enough.
The only time I’ve done a detailed log has been when they asked me to try to reconstruct how often I’d relapsed prior to being diagnosed. I hadn’t kept a diary at the time, so even that was a bit hit-and-miss, but I was able to reassemble rough dates with reference to other things that had been going on in my life - e.g. that one must have been around my birthday, one was just before/after my dad died - that sort of thing. Also, thank God for email, which keeps everything you ever send these days! I was able to find emails to friends, in which I’d said things like: “I think I might not be very well; my legs really hurt this week!” Obviously, these emails all had dates, so it was quite easy to deduce a timeline of probable relapses. You don’t have to be able to swear on oath - it just gives a picture.
Tina
xx
Thank you <3 I really appreciate all the time you took. I will definitely take your advice for next time.
Jenny
Hi I have had hiccups good few days now and it’s dying down but my stomach keeps spasming was just wondering if this is possibly to do with my ms, I have primary progressive!
Hello. I came about this exchange when researching abdominal cramping/spasm in MS patients.
I was diagnosed in 2004. I am experiencing what you describe. Except that there is no pain. It tightens when I stand up and I can’t move until the tension is relaxed. It feels like I’m unstable and might fall.
Was your diagnosis of MS confirmed?
Hi Jenny. I just went through some weird experiences with my belly and belly button. My stomach would spasm and it hurt. Not only did it hurt but it was exhausting. My stomach muscles were so sore for over a week. I just had surgery Friday for female problems and they did Genoclogical laprascopy. I started to wonder if it is my MS rearing its ugly head. Even though I did have female issues he operated on I am still experiencing stomach spasms.