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Swallowing Problems

Can anyone who’s actually been diagnosed with swallowing problems which were determined to be “MS-related” describe what form they take please?

To give a bit of context, nose and throat have always been health “weak points” for me - ever since childhood, and well before MS.

I had constant colds and throat infections as a child, and even went into hospital to have my tonsils out (much more common then today), but returned home without it being done, after my Mum (who wouldn’t say boo to a goose) incurred the wrath of the consultant.

So I’m one of those people who always has the sniffles, is allergic to everything and nothing (no specific trigger ever noted), never knows if she has a cold, always throat clearing, sometimes treated for asthma, etc. etc.

Last week (not for the first time) I went to the doctor about a “throat infection” (but the previous time was ages ago). Lately I’ve been coughing even more than usual, I seem to have a constant tickle that never lets up, and some occasional wheezing. My throat, in my opinion, looks red on one side - but not the tonsil, just the area around it - I don’t know what that part’s called - I suppose just part of the soft palate. I have a slightly sore throat, but the itch is much worse than the soreness - if anything the pain’s a slight ache, but not continual, and I have a hoarse voice.

But the scariest thing is food has started getting stuck part way down - always the same side.

When it happens, I can neither swallow the stuck bit nor cough it up, although I can feel it there. If I drink lots and lots of water, it seems to eventually go, and I suppose I must have swallowed it, but often there’s still a sensation of something there for some time afterwards - possibly because it has actually scratched the passages, and I can feel the soreness rather than an actual obstruction.

I did tell the doctor about this. She had a look and did not think there was any infection - exactly what happened last time.

I did describe to her that I’ve always had throat problems, and so did not link it to the MS, but I’m beginning to wonder.

Looking back, I think vocal hoarseness started to become a more marked problem about 7-8 years ago. At least two to three years before diagnosis, but when I was beginning to feel noticeably ill in other ways. I remember where I was working at that time (I was seconded to a site away from home) and remember beginning to experience a throat problem in long meetings - particularly in rooms that were warm.

Anyway, the food getting stuck thing has happened again today, and was quite frightening. To be fair, I don’t at any point fear I can’t breathe - my airway seems unobstructed - but the scary thing is the feeling of the obstruction being stuck there, and won’t go either way. I’ve started to feel slightly nervous about eating, in case it happens again, but I know I have to eat.

I was offered a referral for an endoscopy, but the doctor felt that in view of the timescales (very long-term throat issues, and not sudden), it was unlikely to be anything dangerous, so given my severe hospital anxiety, she considered it would be an “elective procedure”, but not something that would be really dangerous if left.

So ball back in my court, and don’t know what to do. I know I would be very nervous about the endoscopy, particularly if they insist on passing it through the nose, and can’t go down my throat. I don’t know why one’s more scary than the other - I suppose it’s normal to have stuff going down your throat (even if not usually a camera!) so that is slightly less disconcerting than the idea of it being shoved up your nose.

I’m depressed by the ongoing cough and hoarse voice, and scared by the swallowing episodes, but equally can see the doctor’s logic that if it began so long ago, it’s unlikely we’re talking malignancy. She didn’t put it in so many words, but I probably wouldn’t be here, and certainly not with as few problems as I’ve had, if cancer began years ago.

But I wonder if I’ve been wrong to assume it couldn’t be the MS? I know I should keep away from Dr. Google, and I’d advise others to do the same, but there seems a reasonable possibility I’ve developed vocal nodules. Although most commonly associated with people who use their voices professionally - e.g. singers & teachers, an interesting thing that turned up is they can be the result of tight muscles. I have tight muscles every other damn place - why couldn’t they be in my throat?

Just wondered if anyone can relate to this as an MS thing, or if I was right originally, and it’s just years of allergies, throat infections, asthma, and generally being “prone to that kind of thing”?

Tina

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Hey Tina, How are yer ? Maybe you should have a mardle with Sophie17 on the new diagnosis thread… not exact, but similar, and your words are always wise… Take care, Andy

Hi Tina,

Just wondering if your problem could be acid reflux related which I think is pretty common with MSers. I was dx 19 years ago with RRMS and have been relatively well for most of that time. About 4 years ago I got the sensation that there was something stuck in my throat- a lump that wouldn’t go. I could eat ok, drink ok and swallow but it always felt there was this lump. It wasn’t sore and I wasn’t hoarse. I put up with it for about 6 months then eventually went to see my GP. She recommended I saw an ENT which I did. The ENT used an endoscopy to check my throat.I didn’t realise she would do this there and then so I had no time to worry about it. It was actually fine. She squirted some anaesthetic up one nostril and put the scope up. It really didn’t hurt. She then could see on her computer the inside of my throat and could see there was no lump or obstruction but said it was acid reflux. I was surprised as I hadn’t had any heartburn or other obvious symptoms of acid reflux. I was prescribed omeprazole which did eventually shift the sensation. I still do feel the lump sensation at times now especially if I feel stressed so still have omeprazole on repeat prescription so I can take it if I feel the need. She also said take Gaviscon too after each meal which I did initially but not now. Unbeknown to me my sister who doesn’t have MS also has acid reflux but hers causes her to cough quite abit after eating- she is also prone to catching colds more easily.

Having the endoscope would enable a dx to be made and is really not that bad.Hope you get some relief soon.

Cathy

Thanks folks.

Will have a word with Sophie in due course, but can’t really shed any light, given that I don’t know what mine is, either, or even if it’s anything to do with MS.

Acid reflux has certainly been discussed as a factor - last time the doctor even put me on - I think they’re called proton pump inhibitors.

So it’s not been ruled out. This time I mentioned I’d been taking Gaviscon, and she said: “That seems a pretty good idea!”

I am rather erratic with taking it, though, and think I need to get into the habit of doing it after every meal, and at bedtime, even at times there’s no obvious problem.

I’ve just ordered the super strength stuff at nearly £9 a bottle, so there will be a limit to how long I can keep funding that at four doses a day! If it helps, I’ll have to get back to the doctor and see if she’ll prescribe.

Tina

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Hi Tina
Yes, swallowing problems are not uncommon with MS.
Typically, I get this with a sandwich. A lump of bread swells and forms what is technically a “bolus”, and the normal muscle action of the muscles in the gullet will not take it on down.
A drink, an amount of pain, a feeling of extreme pressure, and after a minute or two, the bolus moves, the pain and pressure go, and the sensations slowly fade. Not very pleasant.

Of course, the action of the gullet muscles (peristalsis) is a function of the autonomic nervous system, so I am guessing that the MS is having an effect on this (seems logical) but the advice of an MS Nurse was to take smaller mouthfuls and chew them very thoroughly. Staying away from white bread sandwiches works almost as well.

Geoff

HI Tina

I’m just wondering if it could be related to any of the meds you are taking? I came off amitriptyline a while ago as it was causing me to cough a lot and have trouble swallowing my food. I’d often have a tickle at the back of my throat when talking, causing a lengthy coughing fit; I always needed a glass of water while I was eating as food would often ‘catch’ at the back of my throat. I was slower and slower at eating and got so that I avoided various foods because they were difficult to swallow. When I mentioned this to my consultant - thinking it was an MS thing - he said to stop the amitriptyline. I do still find some things difficult to swallow on occasions, but thinking about it I guess it’s usually when I’m tired.

HTH and you’re able to get to the bottom of your problems,

Hazel x

Hmmm.

I was aware that swallowing problems can be part of MS, but I think there can be varying causes. I don’t strongly relate to it being a bolus getting stuck - if anything, it seems to be small and sometimes quite sharp things. Today the culprit was a rice salad, so it seemed to be literally rice grains got trapped at a certain point. It feels almost as if there is some kind of nodule or blister, as it’s the same place every time things are snagging.

Also there’s the fact the throat looks sore (my opinion, but not the doctor’s so much) and feels continually irritated, and my voice is hoarse. I can have a coughing fit either whilst eating, or from completely nothing.

I’ve even woken myself up coughing, and had dreamt there was a dog barking in the house!

I wonder if I have some kind of swelling or ulcer caused by chronic reflux?

But then cough is a nervous symptom function, too, so it could be that a wiring fault is saying my throat itches - interesting form of paraesthesia.

I’m certainly going to be more diligent with the Gaviscon for a while. I’m afraid, much like my calf stretches, I tend only to remember when I get the symptom it’s supposed to prevent!

Tina

(Sorry Tina, slight o t ) Hey cc, how’s the new job going ?

Hi Hazel,

I’m not actually taking that much - for a person with MS that is! I have a free hand with painkillers as needed (paracetamol, ibuprofen, and codeine - any combi depending on need), but have consciously tried to cut back on ibuprofen, as of the three, it’s the one most associated with gastric problems. I also don’t take very much codeine. It’s the most effective painkiller I have, but tends to leave me a bit headachy and hung-over feeling, so I tend not to go for it unless things are quite bad.

I’ve consistently refused amitriptyline (bad experience of various anti-depressants years ago, and consequently very reluctant to take any ever again, even in the lower doses prescribed for nerve pain).

Which only really leaves baclofen. I am on quite a high dose of that (60mg in divided doses) for my level of disability, but have not heard of it causing either throat or gastric problems. Oh and I forgot diazepam, but I only take it last thing at night, and it lasts about six hours, so should not be causing swallowing problems in the day.

Thanks for the thought, though - I am open to suggestions, and have considered myself whether it could be anything I’m taking.

I know I don’t drink enough fluids - I have to make a conscious effort to drink enough, so I’m sure that doesn’t help if it’s either acid, or just dryness.

Interesting that things seemed better - if not perfect - without the amitrip! Glad you got some improvement, even if it’s still an occasional problem.

Tina

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Hi Anitra

I had dysphagia 2 years ago changed my diet

Graham

Hi, like what you once said to me…playing guessing games for eons will not bring the answer…one you may not like. Dunno if you recall that response to one of my posts about have I got hsp.

The point I am making is that if I were you I`d go for the endoscopy…I have known several people who had it under sedative, awake but not feeling discomfort. Ask about it, eh?

BTW, how did it end with your italian friend?

pollx

Hi Polldoll,

It’s one of those: “Would you do anything about it if you did know?” type questions.

The doctor has reassured me that leaving it is unlikely to be dangerous, and commonsense says she’s right. If this problem was any kind of malignancy, and started years ago, I couldn’t be as OK as I am.

If I was discovered to have a benign condition such as nodules or polyps, I’m not sure I’d go ahead with surgery to remove them, which would make it a bit daft having bothered to find out! If, on the other hand, investigations attributed the problem to acid reflux - which I already suspect - I wouldn’t do anything I’m not already doing - like keep going with the antacids, try to make sure I drink enough water, don’t lie down straight after eating, and so on. So I don’t know. If I agreed to the endoscopy, I’m sure the wait would be weeks anyway, which means I’m going to have to suffer it for a while, whatever I decide.

Anyway, all still up in the air with the penpal lady. She took some time to reply, leading me to suspect she’d only been after a cheap holiday, and was less keen once she knew I wasn’t offering accommodation.

But the reply, when it came, still sounded enthusiastic, and she said she’s in England 'till early August, and would write again three to four days before any proposed meet-up. Still nil heard, so she’s obviously not someone who likes to make concrete plans. I have a feeling she may be aiming for the weekend of the 1st-2nd August. By a bizarre coincidence, as I NEVER go out, or hardly ever, I’ve already received (and accepted) another suggestion for that weekend, from a friend I’ve known much longer. I thought the more longstanding friend should take precedence, and besides, if one’s a firm offer, and the other’s: “I’ll let you know”, you don’t turn down the firm offer, do you? If the penpal, L, by dithering, has left me to accept something else, that’s hardly my fault, is it?

So I still don’t really know if it’s ever going to come off. I’m certainly not fobbing off old friend S, in favour of new friend L.

You wouldn’t believe how many clashes I get, even though my diary is so sparse. If I had only two invitations the whole year, I’d put money on it they’d clash, and probably with a hospital appointment too, just for completeness.

Is there some law (other than Sod’s) that says invitations, like buses, only ever come along in pairs, so you can’t accept both?

Hope you’re doing OK, Poll. I was sorry to read about the Barcelona disappointment, although I had to hand it to you even thinking about it. I know how daunted I am, just thinking about a day out. I haven’t had a holiday in ages. Mum is sending some money, and I know she would quite like me to have a holiday, or something I wouldn’t otherwise have, although she’s said it’s not for her to dictate. I keep all the brochures, in case I might haul my sorry backside on another trip eventually…

Tina

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Hi again…re acid reflux…I was diagnosed with this after a lot of feelings like angina, which my mum used to have. Turned out after heart tests thats all it was....I say all` but it felt really scary and painful at the time.

Doc put me on permanent lansoprazole. he said we should prevent the acid forming and the need for antacids afterwards. I rarely get it now, but have taken gaviscon and solved it.

Yeh, you were right to accept the invite from an old friend, over an ifffy one from anyone else.

pollx

Hi Tina,I have problems swallowing quite frequently, sounds just like your symptoms, I’ve been told it’s acid reflux, lanzoprizole helps a lot, I have got scarring of the throat as well though, this is due to the Scleroderma I have, but my MS nurse has also told me MS can “relax” the muscles in the throat making swallowing very difficult. It’s the feeling of the having something stuck that’s the worry, I know exactly where your coming from! Bread definitely a culprit for making it worse, as is meat. I have to drink gallons of fluid to get food down, trouble is, that fills you up before you’ve finished eating, oh the joys! Hope it improves soon Tracey x

Thanks Tracey,

Yeah, that does sound similar. I also notice if the food has got stuck once, it seems more likely to happen again - a bit like when you bite your tongue, and it swells, and you bite it again.

So I do wonder if the instances of food getting caught are causing additional irritation and swelling, which then causes further obstruction - a vicious circle.

It gives me a fright when it happens, though so far, has not impaired breathing. But it certainly puts me off continuing with the meal. And I can certainly relate to drinking so much water to try to clear the blockage that I feel full, and then don’t want the rest anyway. :frowning:

I’m taking quite a lot of Baclofen - I wonder if it could be relaxing things too much? But then I’ve tried to cut down before, and my walking got much more laboured, so even if it turned out it was the Baclofen, I’d be caught between a rock and a hard place: do I reduce the Baclofen to help the throat, and put up with the worse walking? Or stay as I am, and accept the throat thing?

Tina

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I don’t take baclofen, so I can’t comment on that 1 sorry Tina, it is frightening, trouble is I find the more you try to swallow the “lump” down the more it seems to be stuck!! Sometimes I don’t have any problems, but it seems to be becoming more frequent lately, hope the gaviscon works for you, doesn’t touch mine unfortunately, suppose its another nice symptom we have to endure! Take care Tracey x

Yes I get swallowing problems. Saw a specialist about it. I also have the uncommon problem of forgetting HOW to swallow occasionally as well.

Hi Tina

Not been on for a few days, but reading through the posts I’m thinking as some of the others have said that it might be best to go for the endoscopy… I know you’d have a wait before they’d do it, and like you say you would still be suffering; but having it done would at least show what it is not. Then they could maybe looking at other possibilities/options available to you - or, they may just say “sorry another MS thing” and then, although it would continue to be a pain to live with, at least you would know.

Interesting re the penpal situation - ‘want to /invited to do’ things always clash for us too!!! Hopefully, she might be able to come just before your weekend ‘date’ or just after… but, of course, the prior engagement might mean you need to save your energy for that. Or, if the prior engagement happens first, you may not have enough energy for the penpal !! Oh the complications of a life with MS huh?

Thanks for asking about the job Carraboy - I was on a training course to start with last week. Boy, oh boy, did my brain get close to explosion point!!! This week I’ve got 2 days training - and homework! Arghhhhhhhhhhh

Hazel

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