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Stomach problem? Really desperate

Hi everyone, 20 and from UK here. I’ve been having issues with eating for quite a while now. More specifically, I haven’t been able to eat much at all, and when I try it feels like I’m force feeding myself. I struggle most with solids. I have to eat very slowly and have small mouthfuls otherwise I’ll gag and retch and vomit what I’ve just eaten. I seem to be fine at the very start of the meal (except for lack of appetite but simultaneously being very hungry) but after a few minutes all of what I previously mentioned starts happening. I also keep waking up with an achy chest… and when I go to take my pills in the morning I throw the water up about an hour afterwards or even less. I’m not sure what’s triggering this, whether it’s stress or the lesion in my c-spine making my gag reflex over sensitive. I gagged even when my mum hugged me as she applied the slightest pressure to my throat! Also sometimes when yawning or coughing. All my doctors have done is prescribe me anti nausea medication and omeprazole and that hasn’t helped. They didn’t seem to want to refer me to a gastroenterologist and I’m getting pretty worried as I have barely eaten in the past few days. Should I ring my MS nurse for a home visit asap, call the doctor again or call 111? I’m wondering if this is gastroparesis caused by the MS…

To add to the problem, I’ve been told by one of the MS nurses that I must treat my low iron, UTI and get my second vaccine before I start my first medication (Aubagio) for my appointment with my neurologist on the 28th of this month where I have to tell him if I’m getting on with it! And I don’t even want Aubagio, but they refuse to give me Ocrevus. I know that doesn’t sound like a lot but my brain is absolutely fried with all the things I have to do and I’m having major brain fog and I feel wobblier in my legs - but that could just be to do with the UTI and lack of food, right? I’m so desperate for help and I have nobody except my mother with me and she is struggling to help me on top of her own problems :disappointed_relieved:

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Hello tleaf

Your stomach problems sound absolutely horrible. You have my sympathy. (I’m suffering different issues with digestion right now and am eating very poorly so can empathise with your lack of reasonable foodstuffs!)

There are certainly MS symptoms including gag reflexes that inhibit swallowing food and liquid. Often people are referred to speech and language therapists for help with swallowing. Maybe this is an option?

Meanwhile, have you tried things like very smooth soups? I’m eating soup at least 3 times a week in place of solid food for dinner. So asparagus soup (sieved), chicken noodle soup (likewise sieved), consommé, maybe tomato soup (the smooth canned version rather than with bits of actual tomato in, although this might be too peppery). I made some broccoli soup (just broccoli, a bit over cooked and blended with a bit of cream). I considered celeriac soup but decided it was too complicated (!). Or blend other soups?

One thing I do find is that swallowing liquids is easier if I
lower my chin towards my chest. Rather than what seems natural to just swallow without thinking, taking more time could help. I also drink water through a straw, that helps.

I personally find the choice of Aubagio for a first DMD to be a bit odd. Especially given your stomach trouble. One of the fairly common side effects is nausea. So might be a really bad idea for you.

I have to agree with your MS nurse, starting a new drug with a UTI sounds like a terrible idea. I’m also a firm believer in Covid vaccines, so think having vaccine dose #2 sounds sensible. Plus low iron. I assume you’ve had your urine tested at your GP so they know what bacteria is causing the UTI? Thus the right antibiotics? If not, I suggest you get the ball rolling on that ASAP (tomorrow?). Plus the low iron. Are you taking iron supplements for anaemia? If not, you should be. That would add to your problems.

It seems that you really need a GP on your side with all of this. Get your UTI and iron sorted. Consider (at least) Covid vaccine. Ask for a referral to an SLT for the swallowing. Plus a dietician if not a gastroenterologist. That might be more useful than a gastro initially.

Have a think about Aubagio. It is purely my opinion, but I dislike the long list of side effects from it. In particular the nausea. MS Decisions aid | MS Trust . Have you looked at MS Decisions aid | MS Trust I’m not convinced that Ocrevus would be a good idea for someone unprotected from Covid. It is an immune suppressant, so if you got Covid you could be really very ill.

In the short term, if your options are one of the less effective DMDs, why not Copaxone / Brabio? The side effect profile is much lower than most others. (I’d definitely avoid Tecfidera with your stomach trouble, it would be imo, a bad idea.)

I think you need a really good conversation with your MS nurse about your DMD options.

But think about all of your health issues, not just MS and avoiding relapses, but improve your general well being (iron + UTI).

Sue

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look up GASTROPARESIS.

When i told my neuro about my eating issues feeling full very fast and sick and also with terrible constipation he wondered if i had that. as it was a phone call he said he would see me in january and also mention this to my GP along with a new drug to help me with peeing all the time at night. I never heard from the GP and didnt get the drug. I did ring the GP about my constipation and stomach issue but just got told to talk to neuro and it all sounded like my MS.

BUT gastroparesis could fit.

as sue said try soups. have small meals about 4 times a day they can be soup but just try and see how you go.

I am not a doctor just some of what you wrote i am dealing with. On another note many moons ago when i was young (many many many moons ago lol) I couldnt stand anyone hugging me, it would trigger off pain and feeling sick, 2 years later i had a massive gallstone removed.

anyway you need to see a GP either way or ring 111 it sounds pretty awful to me taking the MS out of the equation i wont blame it on MS too many times that happens.

Hi @Crazy_Chick, I ended up calling 111 today and my mum took me to A&E and they didn’t do anything for me except test my urine to see if I still have an infection and I do. I’m struggling so much. I asked them if I could be admitted in a psychiatric hospital or the hospital itself as I’m so desperate and they told me they couldn’t do either. I can’t eat!!! It took me ages to eat even a cheese sandwich and I hadn’t eaten all day and had walked all around the hospital! I’m so suicidal about all of these issues. I have nowhere to turn to and I get pin ponged between my GP and MS nurse. They aren’t helping me at all and I’m so scared!

Hi @Ssssue, yes I’ve tried soup and it’s still a struggle for me to eat it all. I feel like I’m wasting away and nobody can do anything about it. And yes, I’m worried about the side effects of nausea from Aubagio too. They aren’t budging no matter how much I try and push for something more effective.

With the vaccine I was just a bit worried it may trigger a relapse and also make it even harder for me to eat properly given that I’m already going through hell. As for the UTI, I got my urine tested at the hospital in A&E and it was still positive even though I’ve been on antibiotics. However, I had to eat something with them and I barely did and probably threw them up on the occasions I was sick. They gave me a different type of antibiotics today. I’m getting incredibly worried and no healthcare professional seems to give a damn. I was taking my iron supplements yes, but I’m sure I threw them up too. It’s a nightmare.

My MS nurses aren’t very helpful and won’t allow me to change my future DMT. I’m losing hope.

Hello again

I was thinking about you this morning. Several things occurred to me. The first and most important I suspect is that when you are young, scared, upset and uncertain, people (professionals) may not take you as seriously as when you’re older. There’s no easy way around this, but maybe you need help from your mum. I know that’s unappealing, you’re an adult after all, but it might help.

Then I think you need to separate out your various issues.

First there’s the gagging and stomach problem. Gagging is certainly a fairly common MS symptom (see Swallowing | MS Trust ). If you split the two issues, it sounds as though you have trouble with swallowing plus a nausea / sickness problem.

With swallowing / gagging, do try changing the types of food as well as how you eat. Use the link above, but some thoughts I had. Eat just white bread, maybe toast is easier than plain bread. Think about what you put in a sandwich (depending on what you like), easier to swallow foods, like cheese spread rather than cheese, softer foods, maybe eggs? Tuna mayonnaise?

Then there’s cheese on toast rather than sandwiches, or toasties. Or boiled eggs, scrambled eggs, etc. Or porridge (many people hate porridge - others love it!), or weetabix.

Then there’s hot milk or hot chocolate, depending on what you like. Even small bars of chocolate - in my opinion, when you’re not getting any nutrition, a bar of chocolate counts as food! Sometimes, as odd as it sounds, people who have trouble swallowing can still eat crisps! Equally, some people can cope with water and others not, so probiotic drinks might help. Even fizzy drinks might work. Everyone is different, you’ll need to try different foods and drinks to see what works for you.

Then what about milkshakes or smoothies? If you have a blender you can mix a smoothie from bananas, milk, yogurt, ice cream, peaches (I’m thinking of smooth foods here, so canned fruit would work well).

Then we come to nausea and vomiting. If this is connected to the gagging, sorting that out might help. Rather than take tablets with water, taking them with milk might be easier, so you may not immediately vomit them up, so get some help from the drugs.

If you have nausea unconnected with gagging, you need to sort out what causes that. Sometimes antibiotics can cause nausea - so check the side effects of what you’ve taken so far for the UTI. Otherwise, there’s (as CC suggested) Gastroparesis, have a look at Gastroparesis - NHS. Does this sound like what you’re experiencing? If Omeprazole/Pantoprazole doesn’t help, than possibly not. Equally, if it’s when food hits your stomach that you’re sick, then it could be. You do need to get a doctor on your side if that’s the case though, you’ve said they won’t refer to to a gastroenterologist, do you know why not? Maybe this is where you get your mum involved? Try to get an actual appointment with a GP and take her with you. (Let her be your mum and take charge?)

Sorting out gagging and nausea will hopefully help with the UTI and the anaemia. If you can’t keep pills down, you won’t have been able to sort those out.

The next problem you have is talking to your MS nurse. Try to remember, it’s your body. If you don’t want Aubagio, you should not have to take it. There are other options for first DMDs. Have you tried circumventing your MS nurse? Phone your neurologists secretary and throw yourself on his/her mercy. Explain that you can’t start Aubagio, you’ve had too much nausea already and don’t want it. Will s/he pass on a message to the neuro to try to sort out an alternative? If that doesn’t work, can you be very direct with the MS nurse (maybe use the ‘mum card’ again)? Tell the nurse that Aubagio will not work for you. Directly. You want an alternative.

Lastly, feeling suicidal is terrible. I have been there, in fact at a similar age to you. Trying suicide is a horrible idea. What if you get it wrong and end up in a worse state than you are now? What about your family and friends, how would they feel? Try really hard to get some of your health problems sorted and maybe your mental health will improve too. Talk to friends and family about how you feel. See if it helps. If not, carry on talking to us here.

My last point is the Covid vaccine. It isn’t a requirement. Many people don’t want it. But a relapse isn’t necessarily going to be the result of the vaccine. If you have some other reason for refusing it, then that’s up to you, but relapse isn’t likely. Yes, a few MSers may have relapsed following vaccines, but the majority have not. And vaccines are the way to protect yourself and those around you. I know there are people on this site who disagree with me, that’s their choice (as it is yours), I’m just expressing my view.

I hope some of this helps. Being 20, feeling alone and scared as well as so flipping ill is horrible.

Sue

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