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
