It feels like my eyes don't track properly together and sort of flick about and lose where I am on the screen/page. And the blurriness and occasional double vision doesn't help. Does this go away with good treatment?
I’m on prednisolone (only 15mg so idk how people cope with higher doses omg) and basically, they’re dampening my sense of empathy and making me really angry when I feel threatened, by things that wouldn’t normally make me feel threatened at all.
I am feeling very ashamed of how I’ve responded to certain situations of late and I’ve been saying and doing things that are really out of character. I’m explaining to the people around me that it’s the drug and they know me and my usual character and are giving me grace but I’m in a total guilt spiral about this and terrified of what I’ll do/say next?!
Can any of you relate? My doctors categorically will not allow me to step down my dose and even want to increase it so we’re in a bit of a battle about that at the moment. I’m going to be on it for at least a year it looks like, if not longer, while other medication options are started and I can possibly be tapered.
I would really, really value any advice you have to temper this. I’ve tried L-theanine and while it does seem slightly calming it has by no means fixed things at all.
For instance, I keep getting recommended Vyvgart (sp?) when I post here, but that's not available for patients in the UK. We only typically have oral steroids, and perhaps other immunosuppressants like azathioprine. We are usually only given IVIG in a crisis. We recently got Rystiggo (sp? again) approved but only if all other treatment options fail first. I'm new to this but from research I believe this is factual. Open to corrections if I'm wrong.
I think it could be really helpful for us to be able to support each other well if we have in mind that what we have access to, others might not, and vice versa! It seems to be VERY different across the world.
Really appreciative of this community and the support you all offer. I made a post about steroid side effects recently and your tips have really helped me.
Newly diagnosed. I’m not even on that high of a dose of pred because IVIg helped get me on the straight and narrow so we didn’t need to go all the way up.
I’m getting adrenaline surges, especially at night. I can’t sleep very often and when I wake up I’m jittery and filled with anxiety, extreme anxiety. I’m having horrible anxious thought loops and even when I put on something funny or meditations I can’t focus, the thought loops are stronger. I’m crying a lot.
My face is getting rounder by the day. I am eating low carb now to try to counteract any weight gain and that seems to at least temper my appetite a bit, and my mood. But it’s hard because I just want to eat comfort food now I can swallow again.
I also have acid reflux that’s burning my oesophagus and stomach even though I’m on 2 acid suppressant medications. And avoiding reflux triggers.
I already spoke to my doctor this week and he kinda said “some people are on much higher doses” 🤷♀️ and left it at that. I can’t live like this forever… I don’t even have a plan in place for anything else. I tried to ask for a plan but I’m being referred to another team who deal with MG. It’s a waiting game. I emailed and got the same response again.
Any tips you have for me while I deal with this would be SO appreciated, especially the anxiety stuff. I am not usually like this and some of how my mood has been has been really, really scary. Like, scary low. I fear that neither being on the meds or off the meds is good for me but they aren’t hearing me about how bad this is.
I got diagnosed with a serious autoimmune condition that could’ve killed me while they sat back over and over again and asked me how I don’t know it’s not just some functional thing, whether it’s just because I’m anxious about my health that it’s happening, almost all of them. All men, all young. So disheartening. It breaks you and then you actually get a diagnosis and you have antibodies so there’s no refuting your symptoms anymore and suddenly they’re not all in your head but you have to go back to the same people because if you don’t you’ll actually die. How the hell do you cope with this? I’m awake at night replaying those appointments over and over, filled with rage and fear. The way you have to advocate for yourself with all health “professionals” and they hate you for it. They loathe you for asking for help. They treat you like you’re the sh*t under their shoe for asking for what you need, the stuff they’re supposed to provide you with. Why are they all working in the field? If they hate sick people so much? If they don’t actually want to help us what are they doing there? How do they get paid SO MUCH MONEY to sit there and tell 100 people a day their physical health problems are all in their head? Who do they think they are?
I’m in a weird space where I’ve been put on them but nothing has been explained to me about them, I’ve had to do research to learn what I need to know.
I’m so grumpy all the time, I feel flat and like I’m not really experiencing any joy in anything anymore. I am snippy with my partner. I’m gaining weight SO fast even though I’m not eating much because I just don’t want to. I’m only on a relatively low dose.
I’m still having issues with swallowing even with this and a course of IVIG. I’m still having breathing issues. I still get to a point where I’m suddenly so weak that I can’t keep walking anymore. Still find talking quite tiring.
I have my first appointment since my diagnosis coming up next week, and I just want to say I want to stop this drug, I hate it.
What can I do? Will they let me come off them? I’m in the UK if that’s helpful to know.
I got sick a couple of years ago and it took ages to figure out what it was, everyone told me I was just stressed. I got a virus and suddenly couldn’t eat dinner. It progressed to the point that I was choking on water and got admitted to hospital.
Sometimes when my tongue gets weak it feels almost like I’ve had anaesthetic injected into my tongue. It feels kinda fat in my mouth lol, and like I can’t move it around like I should be able to. Does this match your feelings if you have bulbar symptoms?
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!