u/tinytillymouse

How do you work on feelings like you're cursed? Like you did something wrong to bring it upon you? I feel like I can't escape the anxiety that I did this to myself. I feel so guilty all the time.

I have an autoimmune condition now on top of endo, a bowel condition and POTS. It makes me choke on food and water until I get hospitalised.

Everyone told me I was just stressed for a year and a half trying to figure out what was wrong. I can't shake the feeling that it's my fault that all of this has happened.

I have to be on them for a very long time. I’m already gaining, even with swallowing issues. Is there anything I can do to stop this?

How long did it take for your swallowing to improve? I’ve been given an emergency 5 days of infusions and my swallowing initially seemed to improve but feels a little worse today (day 5)

Hi everyone, I thought I would share my story here as when my swallowing problems started, I used to read this subreddit a lot to see if I could figure out what was behind my dysphagia. I wanted to notice any similar patterns to other people’s symptoms to see if I could identify what was wrong with me.

I really hope this might help someone.

My swallowing issues started very suddenly last January. I got a chest infection that hit me very hard. Before this, I had been having what felt like balance issues for a while, a lot of dizziness when I was walking. Some tongue weakness when I talked sometimes. My eyes started to blur a bit and I had double vision in my right eye when I tried to read. It didn’t register that it was shut and would flick around like it didn’t know where it was in my head!

One night, I tried to eat dinner and it just wouldn’t go down. It was very odd. I assumed it was because I was quite dry from the cough, and thought nothing of it. However, the next morning I made some porridge and the oats were getting stuck immediately all round my mouth, my throat, and in my chest. I started to worry a little bit at this point. My jaw felt like it was getting exhausted by chewing. It felt exhausting and impossible to coordinate eating and breathing. Even trying to have a mouthful of food would make me short of breath.

This went on for days, and I switched to a liquid diet and contacted my doctor. I started having fainting episodes and became so fatigued I had to crawl to the bathroom. I had gone from walking 20,000 steps a day to this within weeks. I couldn’t lift my arms to do my hair or makeup without becoming short of breath. I couldn’t breathe when I lay down, and barely even when I was upright, it felt like I was always air hungry. My husband had to get a wheelchair for me so that we could go out anywhere.

I went to private doctors in the end (UK based) because no one on the NHS was helping me. I had a manometry done which showed that 9/10 swallows were failing. I had a video fluoroscopy that showed weakness in my mouth and pharyngeal muscles. No one knew why, though. I had clues but no answer.

I was repeatedly told I was just stressed and anxious everywhere I turned for help, on the NHS. My husband and I visited A&E probably more than 7 times last year. I was admitted to hospital once but then discharged and told to try harder. In spite of choking on my own saliva towards the end of the day and barely being able to take in any liquids. I was seriously dehydrated.

Previously, I had been diagnosed with POTS, and fortunately my GP agreed to prescribe me a medicine called pyridostigmine that I’d been on years ago to control my fainting episodes. Suddenly, I was able to swallow again. For a year, I gradually built up strength. I still choked on my saliva towards the end of the day, I still had to prop myself up at night to not choke or stop breathing, but I could walk again. I could eat most foods, albeit with difficulty especially towards the end of the day. Having lost over 20kg, I gained weight back and felt like I could just about get on with my life.

Then, I got an appointment with a neurologist and spoke to them about POTS. When they heard my reaction to pyridostigmine they became suspicious of a condition called Myasthenia Gravis. They ran an antibody panel and what do you know - it was positive! Finally, an answer!

I’m now on treatment and hoping to get much closer to feeling how I used to feel before this all started.

To anyone reading this, don’t give up on yourself. You know your body better than anyone else. Don’t let them fob you off, keep going in pursuit of your answer. You deserve to know what’s wrong.

There were times last year when I was terrified I would die. There were times when I wanted to, to be honest. It was absolutely dreadful. Medical misogyny is terribly dangerous. I was teetering on the edge of respiratory crisis and regularly choking for 7 months before I got prescribed the medicine that started to help me.

You have strength within you that you wouldn’t believe is possible, okay? Keep going. Don’t let them win.

They’re doing the IVIG treatment! I’m nervous but glad to be moving forwards from choking on my own saliva and nutritional drinks all afternoon, evening and night.

Thank you so much for your caring messages, advice and support. I was also able to get something to help with the cramps pyridostigmine is giving me.

Hopefully will be feeling better soon. What an amazing thing to be able to talk with a community of patients and hear about their experiences.

I’ve been diagnosed recently and my swallowing has completely tapped out. I can cough my way through water and thin liquids but they hang around in my throat for several swallows. Sometimes they start to go up my nose. Anything thicker and I’m trying to clear it for a very long time, sometimes hours. Solid food gets lodged all around my gums, in my throat and in my oesophagus. I am having episodes where it feels like something is sitting on my chest and I’m getting pretty breathless when I’m talking (this isn’t often though).

I’m on steroids, fluids and nutritional drink supplements. Each day a new dr comes round and asks me to go over my history and they all give me a different opinion about what to do. They’ve been saying about IVIG and then not doing that. They’re struggling to get hold of neurology. I’ve seen an SLT today. I was admitted 4 days ago. One dr has said there’s a question mark over my diagnosis. I have achr antibodies. Pyridostigmine is controlling my other weakness but not helping with swallowing anymore. I have ptosis which they’ve seen since I got here. They keep checking my oxygen and one dr said I’m healthy and fine. Others say about ICU. They want me to use a peak flow to monitor my breathing. I’ve seen a neurologist who said they were thinking about IVIG but the notes haven’t come through since yesterday. They’re also thinking of just monitoring me on steroids.

What can I do? I don’t feel like progress is being made. I am struggling to swallow my own mucus and saliva to the point I’m waking up with my hair drenched with drool sometimes. They always see me in the morning where my symptoms are at their best. Only the SLT has actually watched to see what happens when I eat.

Any advice would be really appreciated.

It happens to me fairly regularly, I’m just starting steroids now as I’m recently diagnosed. What do you guys do when you try to flush things down with water or more food and it just stays put? I can feel it when I’m talking, and when I’m breathing sometimes it moves a bit, no coughing dislodges it either. I’ve tried having a sweet too to make more saliva but it isn’t budging. When I first got sick with this I went to A&E about it but they sent me home each time without help so they won’t help me. It’s so uncomfortable.

please help me. nothing compares. everything just melts off my face. sinks into fine lines. I will mourn this forever. give me your best dupes please

Hi everyone, I’m getting booked in for a SFEMG to solidify my diagnosis following positive ACHR antibodies, positive response to pyridostigmine and generalised symptoms including swallowing issues and breathing issues. I’ve also been prescribed steroids. My question is - if I start taking the steroids and the test is in several weeks, could it skew the results? I was wondering if any of you have been told this, as it hasn’t been mentioned and the NHS is very slow… it might be weeks until my test? Months even? I have no idea! Many thanks if you know the answer!