Forum

Swallowing Difficulties

Morning everyone

I am still waiting for the hospital to get in contact about my MRI results and also to send a blood form because the consultant wrote me a letter summerising our last conversation. The letter also said my blood tests were fine but she wanted me tested for B12 and Copper which is no surprise from what I’ve read.

I wanted to ask about swallowing difficulties. The consultant asked me if I had any and I said no because it wasn’t a question I had thought about at that point. Since the brain haem I get brain freeze quite often and I was expecting questions about my hands and arms and not anywhere else. Anyway I do have problems occasionally. Every so often food seems to stick in my throat and I can’t force it down. Much more regularly I haven’t eaten or drunk anything and I just feel like I am trying to swallow a lump constantly, that can be a fairly constant thing for days. Does this sound like the kind of thing she meant when she asked me?

It’s occured to me because last night was particularly bad. The lump in my throat felt huge when I was trying to eat. I couldn’t force it down and ended up trying to make myself sick (sorry) to releave the pain in my wind pipe but it didn’t really help. I have barely slept all night (probably because I didn’t keep my amatrip down) and the discomfort is still there.

I am in rehab all day today but will try and see my GP next week if I don’t hear from the hospital. I worry that if I ring back and say ‘yes I forgot I have swallowing problems’ I will look like I am trying to fufill the symptom list. The consultant seems very brisk and business like but didn’t cut me any slack when I got my left and right mixed up even though she knows I have some brain damage now etc. I just want her to ring and say ‘you’re MRI shows X which means you have Y and now we do Z’ but from reading your posts it just won’t be like that will it?

Wow, sorry! Bit epic! Any experiences or opinions very welcome.

This is quite similat to my own experience. I am undiagnosed, had a terrible episode (onset of neuro probs) that floored me for months so I was under a neurologist.

Between appointments I had what you describe, though I wouldn’t call it pain, for me it was acutely uncomfortable and felt like food was sat in my gullet for hours after. I came on with a kind of weak flu at same time and then got a cold sore right across roof of mouth and then lost my gag reflex. This meant I wasn’t ready or intending to swallow food…it was kind of falling down my throat. Then on occasion I would have food go down my windpipe whilst that was happening.

Really nasty and scary. I went straight to the GP who did an urgent referral to my neuro who I managed to see the following week. He has referred me to an ENT consultant to get it all checked out.

After two weeks it improved dramatically though I have a weakness left in my throat. Last night I breathed in through my nose as I was chewing and ended up with food going up my nose and then somehow down my windpipe.

I have resolved today to stop eating stuff like rice until I have this sorted.

You have my sympathies its really horrible, and leaves me upset every time it happens.

Gillian x

Thanks so much for sharing your experience

My rehab team told me to see the GP today so I did.

She said its an anxiety thing rather than a nuero issue because it isn’t constant. Because I have chocked a couple of times I am more anxious and more aware of it. She said the anxiety about the MRI and all the questions etc is a lot to deal with.

She also put me on steroids for 5 days because my chest is starting to struggle. My asthma has been fine for a long time but I seem to just be falling apart this week. I also called orthotics to find out where my new splints are since they were ordered 2 weeks ago and my hands and arms are very painful today. I was promised a call back and it hasn’t happened.

One of those days!

Are you happy with what GP says? My swallowing issues are not the same every day, they seem to occur if I don’t concentrate on what i’m doing or eat flaky, dry or chewy food.

Strangely enough my swallowing issues played up as I was generally unwell, as it seems that you are.

My GP put me on a high dose steroids for 5 days today also and said hopefully i will feel the benefit…so lets hope this helps you too!

What are splints? I have a lot of wrist and arm pain.

Gillian

I am not sure, my GP is lovely but she didn’t actually check my throat.

If there is a problem I guess it might show up on the MRI - if I ever get the results.

Splints are supports for my hands. I have them partly for the pain they are investigationg but also because I have a bone disease and get joint pain and also since my brain haemorrhage last year I am weaker on my right side.

Hope our steroids work! My throat still hurts and feels like I have a lump

Sorry that I am so late replying.

I think given what you have been through already, it would be difficult not to suffer with anxiety.

However, just because you have existing issues doesn’t mean everything should be attributed to them.

If your swallowing continues to play up I would go back and see your GP again, my GP realised that I had lost my gag reflex when she examined me. That’s when she arranged the urgent referral and told me to be careful and eat mush until resolved.

Trouble is I love my grub, but I’m deffo on mush after last night.

Remember to mention this when you do see the neuro, though I don’t think the throat/oesophogus area would be looked at when brain MRI requested.

No prizes for suffering in silence my dear remember

Keep me posted how you are, pm if you prefer.

Gillian

I don’t know a whole lot about swallowing difficulties, partially because it’s not something I’ve had problems with myself so I’ve never bothered to research it properly - sorry!

I do know that swallowing problems can be a sign of vitamin B12 deficiency so you should definitely have your levels tested. Apparently blood tests for B12 are not terribly accurate so if your results are low normal, you need to push for more sensitive tests to check that they aren’t actually low. B12 deficiency can cause symptoms and MRI results that are almost identical to MS, so it should be taken very seriously: if left untreated, B12 deficiency can cause serious, permanent disability.

In terms of neurology, and from what I can remember(!), swallowing is controlled by the brain stem. The brain stem can be seen in MRI scans of the brain and of the neck too usually, but it can be a bit tricky to see things clearly there. (The lower parts of the brain and the spine are harder to scan.)

I’ve sent Jacqui (user02) a pm about this thread in the hope she can add more - she’s sadly got long experience with swallowing problems so is infinitely more expert in this than me.

Karen x

Morning

If they ever actually send me this blood form I will be straight back to the hospital to get stabbed again. I chased up a week after my first call on Wednesday and they haven’t returned my call I want to ask them when I will be getting the MRI results too. I guess I will be ringing agin on Monday unless the postman brings anything this morning. The consultant letter has an email address too. I might try sending an email but the last time I rung up I was told the normal secretary was on leave. Someone would check the email tho? I find typing a lot easier than dealing with the phone as I have auditory processing disorder (honestly I am presenting such a picture of health LOL!)

My GP said that if the swallowing was neuro related it would be constant and not coming and going? My MRI is brain and neck because she says the problem is going to be a trapped nerve in my neck. I am finding this so hard not to worry and self diagnose and to be patient.

Thanks for listening and helping x

I’ve just re-read your first post and see that the neuro’s letter said that he “wanted you tested for…” That generally means that the GP should order the tests, not that you will get the referrals in the post from the neuro. So you should see your GP and ask for the tests (your GP gets the letters, but most don’t follow up on them unless the patient asks for it).

As far as things coming and going, I honestly don’t know about swallowing. An awful lot of neurological problems are intermittent though so I don’t think it would rule it out. Jacqui will know better. Hopefully she’ll get my message soon and be able to reply.

Btw, MRI results tend to take a minimum of two weeks, but at some hospitals they can take a lot longer - it all depends on the radiologist’s workload.

Kx

I got my dx in March this year. Swallowing has been an issue for me over the last 11 months…first swallowing issues were noticeable 3 years ago. It has definitely been a symptom that has fluctuated…so from my experience is does come and go. I recognise the whole rice thing nuts are horrendous for me as well. It can be managed when at it’s worst, specifically for eating my list is below. 1. Sit upright at a table to eat. 2. Eat slowly chew carefully. 3. Try not to turn your head to either side and don’t begin to talk while eating. 4. Tilt your chin towards your neck to swallow, this close your wind pipe and will help to stop choking. 5. Always keep a drink next to you to help get the food down, 6. Wet food…plenty of sauces can help. As for tablets and medication when symptoms are bad I use a crusher and mix my tablets with yoghurt( the thicker the fluid the easier they’ll go down). Also nag your doctor I have a lot meds that are soluble but have found if I don’t ask I don’t get. I also use, again at bad times a synthetic saliva spray( different flavours and discreet enough to look like a breath freshener) this can help when things feel like they’re stuck. But the main thing is that this does come and go and there are times when for me other than taking tablets it’s barely noticeable; so it’s not all doom and gloom. I did also see during diagnosis see a ENT specialist who confirmed it was neurological for me but he was also very positive in reassuring me that it would improve. Hope you get your answers try not to worry x Libby

Dear FeeHutch

I have recently had swallowing problems that my neuro said was caused by my MS - It coincided with speech problems (nasal, slurring) and the usual legs and arms mullarkey that I’m more used to. It lasted 3 weeks, and I am just recovered from it. I couldn’t eat anything that wasn’t liquidized for that whole time. It was a horrible and frightening experience, and you have my sympathy.

I would advise seeing your GP about this. They may send you to, or recommend you see, a speech therapist (they know lots about swallowing). I saw a speech therapist and she said that there were various parts of the swallowing process that can go wrong. Mine was my tongue not getting the food back far enough to trigger a swallow, which left it stuck, and forcing me to choke it up to have another go. Your problem may not be the same step in the process.

Your GP may also be able to prescribe stuff you can drink that is “nutritionally complete” - i.e. a milkshake type thing that has loads of protein, ergyy and all the vitamins and minerals you need to stay alive. I found these an invaluable way to keep getting food into me. Because they have the texture of custard, they are easy to swallow.

There’s also an excellent booklet on this website with some good tips. Tips that my speech therapist gave me that weren’t in the booklet are 1) drink iced water with food, the cold somehow prompts a better swallow. 2) Don’t try to wash food down with huge mouthfuls of water, just a sip is best to trigger the swallow.

Good luck!

Dave

Hi

No the letter said the form was enclosed but it wasn’t. I mentioned it to my GP to see if the form had gone with her copy of the letter but it hadn’t.

I emailed the secretary today and she said the new blood form was waiting to be signed. My consultant is back this coming Monday not last as she had told me on the phone. She had said she wanted the MRI done as soon as possible so she could see the results as soon as she got back. It is really good of the secretary to get back so quickly and she also said she had my MRI report waiting with the new blood form in the Doctors office.

My only previous experience of scans etc is as an emergancy so I’m still getting used to how this all works

Thanks Dave.

I had a brain haemorrhage 18 months ago and as part of my rehab team have been working with a speech therapist. I have improved a lot but still lose words, slur (especially if I am very fatigued) and get terrible jaw twitches. I mentioned the swallowing to her yesterday and she suggested seeing the GP which I did yesterday evening.

As I posted my GP thinks it is an anxiety thing but as I was emailing the neuro consultants secretary this morning I included some stuff about the swallowing problem and the secretary said she had printed off my email and put it with the MRI report so at least I won’t have to try and remember to tell her about it all now

Thanks for all your advice, yours too Libby. We have been out for lunch today and I struggled a little bit. Extra iced drinks did help for one.

I am trying not to be too hopeful that the consultant will ring on Monday afternoon and just tell me it is all something nice and simple - not least because I’ll be out taking my 6 year old for her MRI results which should give her the all clear for minor surgery! I will report back as soon as I have news though and thank you everyone. Just understanding what I am going through is a huge help

Thanks for some really interesting experiences.

Dave and Libby…is there any chance that steroids may improve the swallowing function?

By the way thanks for all the brilliant tips in the meantime, and Feehutch glad your lunch went well and all the best with your little girl

Gillian

Gillian,

I saw my neuro last Friday, having just recovered 95% of my swallowing ability a few days before. He said to me that steroids might have helped me recover a bit quicker.

I’m still very new to all this MS stuff. Up until 3 weeks ago, I don’t think I’d ever had a “relapse”, just symptoms that came and went, but never went entirely, and I was thinking I was having an easy time compared to lots of people who’s stories I read on this forum, so I’d never thought about steroids before. Is that what they give you with a relapse? Who decides when you need them? What’s it like taking them? Sorry - Going off the point a bit here aren’t I?

Another tip for anyone having swallowing problems - Panna Cotta. My wonderful daughter-in-law made me loads whilst I was struggling. It’s fantastic stuff and full of calories (I think it’s just double cream and sugar). Yum!

Dave

Gillian,

I saw my neuro last Friday, having just recovered 95% of my swallowing ability a few days before. He said to me that steroids might have helped me recover a bit quicker.

I’m still very new to all this MS stuff. Up until 3 weeks ago, I don’t think I’d ever had a “relapse”, just symptoms that came and went, but never went entirely, and I was thinking I was having an easy time compared to lots of people who’s stories I read on this forum, so I’d never thought about steroids before. Is that what they give you with a relapse? Who decides when you need them? What’s it like taking them? Sorry - Going off the point a bit here aren’t I?

Another tip for anyone having swallowing problems - Panna Cotta. My wonderful daughter-in-law made me loads whilst I was struggling. It’s fantastic stuff and full of calories (I think it’s just double cream and sugar). Yum!

Dave

Thanks Dave,

I am not diagnosed, and still hoping this will totally go away.

I’ve read up as much as I can on the ms subject and therefore I assume that you have relapsing remitting MS. I believe that high doses of oral or IV steroid can stop a relapse in its tracks. (halt the damage??)

I think this means that you can get on with recovery quicker…ie feel better and rehabiliitate any issues left like this swallowing problem.

I’m on nowhere near the highest dose of steroids you can be given, but I’m on day 2 and I feel strong, my joints arent hurting and the horrible tendon pain in my achilles, arms, wrists and fingers is gone. There are allegedly side effects and I don’t fancy putting any more weight on…so the panna cotta is banned for me

My GP said you have to put to one side the fact that the steroids make you feel like wonder woman, its whether or not you gain in terms of symptom improvement…I most definitely feel that I am but I will keep you posted.

Diagnosed people please comment as I am not diagnosed and am only saying what I am assuming from what I’ve read and heard.

Gillian

Hi, sorry I’m late in replying to this. I’ve been away for a few days. I have permanant chewing and swallowing problems.

Feeling like having a lump in your throat can often be due to globus. Yes this can be caused by anxiety. It can also be caused by GERD/ acid reflux. It might be worth trying some heartburn meds such as gaviscon to see if this helps. You can have acid reflux that you don’t get the burning pain of heartburn.

Slurred speech and swallowing problems tend to go together. There are two ways to look at swallowing problems, either it’s neurological and a speech/swallow therapist can do tests to help determine this. It can also be assessed by a gastroeneterologist with endoscopy.

It also depends where food is sticking. My Mum gets food stuck lower down in her oesophagus which causes a lump sensation. She has a condition called achalasia and has to have her oesophagus stretched and has also had a ballon inserted.

If you are losing weight, coughing whilst eating, getting chest infections swallowing problems should always be taken seriously. I have problems chewing and often initiating a swallow. My swallow therapist suggested using a teaspoon, eating soft foods and always having sauces or gravy. Sit upright and don’t have the TV on or have conversations whilst eating. I also have prescription complan which has added vitamins and minerals.

Jacqui xx

Thanks for your reply Jacqui.

The more I think about it the more surprised I am that the GP didn’t even check my throat.

I have a long standing issue with heartburn and reflux and have had tests every few years to make sure it isn’t being caused by something else because it’s never cleared up. She also prescribed me steroids at the same appointment because my chest was wheezy and she wanted to avoid an infection.

Still the consultant is back today and I know my MRI report is waiting for her so I can only ‘hope’ if it is something else causing the problem it will have shown up.

As far as everyone is aware the speech problems are a direct result of the brain haem because the anyursym ruptured over the language centre in my brain so to start with I could hardly speak at all. I think my brain haem is confusing things a bit sometimes. The consultant said there were several things she was unhappy with but couldn’t be sure if they were a result af the haem for some, my bone disease for other things like my gait OR an unknown 3rd thing! I get exhausted trying to keep track of it all. I’d much prefer it if the MRI just shows nothing new or something definite because asking me to remember and describe things is very hit and miss!

Hi Fee

I’m also slightly late to this post. After my first major notable episode last oct I thought I had intermittent swallowing issues though very mild. I’d noted when it flared up that dry foods would make it worse (ie potatoes and mushy peas etc). I also ended up with acid heartburn with it at times which I had a problem with when I was 17 (I’m 29 now) but that was because of what I was eating and once I realised the food triggers it all resolved. So I wasn’t completely sure whether it was neuro related or acid heartburn. I wonder whether neurological defecits can slow the transit of your food and then cause acid/reflux and then as a result the sense of your swallowing isn’t right.

My swallowing issues felt like a lump in my throat but it made me feel very full I couldn’t eat much. I also kept needing to burp and I could feel the lump of food in my throat shift or bubble everytime when I did this (the act of burping seemed to widen my food tube and encourage the food to shift a bit - sorry gross I know, I never ever burp usually). I never did regurgitate though. I had swallowing issues with some meds I was on back in April last year and the sensation felt exactly the same - food sticking to the back of my throat and then the ball type sensation.

I never really got the chance to mention these issues to my first neuro; firstly because it was intermittent I wasn’t sure whether it was related to my neuro issues and secondly i could still eat it just meant I had to eat very slow, drink, think what I was doing, chew food properly, sometimes double swallows help too. Everytime I thought of going to the GP by the time my appointment would come through I’d be feeling ok so I left it.

I had the swallowing issues on about 3 occasions lasting anywhere from a few days to a few weeks. I don’t have swallowing issues anymore touchwood but am still prone to the flare up acid/heartburn if I now over eat, or lie down soon after - its not at all related to what I eat though. This is why I think maybe its related to the slower transit of food - who knows I’m no expert. Be interesting to know if other MS’rs have had acid/reflux or gastro issues. In my first notable epsiode my bowel and bladder was affected also so the neuro thought ? epsiode of spinal inflammation.

Sorry it’s not really giving you specific advise but thought it might be nice to share and see if anything triggers bells with anyone else.

Reemz

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