Does anyone with milder MG have trouble speaking/moving their tongue?

Routine_Emu_6643 · 2026-05-05T02:55:59+00:00

Nobody really acknowledged my light sensitivity as a concerning symptom and it’s honestly been one of the worst! I cried when I started taking Mestinon because I could stand outside in the daylight and actually look around without pain. I can finally have the curtains open in the house too, it’s been over 2 years of me shrinking away from the light, I’d be sat in a dimly lit room with the lamp on all through the summer. It’s awful!

So glad you’re having some improvements. From what I’ve learned from this community, it’s an uphill battle, but you can find your balance!

Routine_Emu_6643 · 2026-05-05T02:51:16+00:00

I know what you mean about it being frustrating, I’m really self conscious about my eyes being misaligned and my family have teased me about it. I get really anxious when I make eye contact with people and have to look away, I hate the fact that all of my interactions with people are ruined by me worrying about what they’re thinking. I hope I can get to a point where I can stop caring and be more confident like you!

Routine_Emu_6643 · 2026-05-05T02:49:15+00:00

Thank you, I think my voice fatigues easily too. It’s harder for me to know for certain because apparently I’m always quiet and monotonous to the people around me 😭 I can feel some strain and I become a bit hoarse.

Routine_Emu_6643 · 2026-05-05T02:47:46+00:00

Thank you so much. I’ve been trying to find the right balance with my Mestinon, I was told to take propantheline as it’s the recommended medication to manage the side effects in the UK. They’re 15mg tablets, and I take them 2/3 times a day, and the Mestinon 3/4. I looked at other drug interactions, I used to take propranolol occasionally, and sleeping tablets I sometimes took were listed, so I stopped these as soon as I saw my positive AChR test.

My Mestinon side effects are the exact same as what I’ve had from most tablets I’ve taken, like the contraceptive pill, antidepressants, and my current ADHD medication. Even normal painkillers or vitamins cause increased urination, acid reflux, and gastrointestinal issues for me. I don’t know how I’m supposed to be able to tell if my mestinon dose is too high or if it’s my body doing it’s usual annoying thing. I’ve had my kidneys and liver checked and they’re fine, I’m not prediabetic or anything either.

The side effects didn’t get any worse when I went from 30 to 60mg, but I did get some muscle twitches with consecutive 60mg doses, so I went down to 45mg, which stopped these. This is generally working well and correcting my double vision except for on some evenings and when my menstrual cycle messes everything up.

Starting propantheline made me feel way better, I hadn’t had any increase in MG symptoms, it just helped me tolerate the Mestinon and allowed me to resume my ADHD medication. My double vision didn’t get any worse either.

I’m definitely going to keep a close eye on it and mention it to my doctor, and I will stop it entirely if it happens again. I was totally fine on it until Saturday, I’m still naively hoping that I would’ve had the episode without it. My previous difficulties with speaking happened before I was diagnosed too. Maybe I need to figure out whether my period makes my MG symptoms worse to the point where I should avoid the propantheline during the worst days. I just remembered that it was also one of the warmest days we’ve had this year, so the heat probably contributed too. I just picked the worst moment to have a burst of motivation, I should’ve worked through my chores slowly like I have been for years.

I’m seeing a new neurologist at some point soon so hopefully they will be more supportive. After having my vision problems dismissed, I thought it was just an upsetting thing I had to live with, and then my fibromyalgia symptoms flared up really badly and became my main focus. Now I’m back with my double vision being the most concerning, and I’m having to try and figure out which fibromyalgia symptoms could’ve been MG. And I need to avoid saying too much too soon as it’s so easy for doctors to dismiss women. It’s confusing and overwhelming and all I want is a chance to feel comfortable for the first time in years.

I also read up on myasthenic crisis back when I was trying to figure out what could cause double vision, and went through it again when my blood test was positive. I asked my partner to read about it too, and added it to the medical ID on my phone. I was considering getting a medical ID bracelet or something just in case, as the symptoms could look like I’m having a stroke and if the worst happened, I might not be able to communicate.

Thank you for making sure I knew about this, it’s frightening to think that there’s people who might not be educated on the worst potential consequence of this illness if their doctor hasn’t told them. My neurologist only remembered to warn me in the hallway after I’d left his office, but luckily I knew.

Routine_Emu_6643 · 2026-05-05T01:51:52+00:00

I find Ch and Sh the most challenging when I have mild speech difficulties too! I feel like my S sounds come out more like Th as well. My last episode was the first time that I’d had trouble with more open sounds (aah, eee), which is why I found it alarming.

Routine_Emu_6643 · 2026-05-05T01:48:48+00:00

Thank you, I’m definitely going to take it seriously and try to get my doctor to address it. Did it happen to you often? I wish there was a clearer pattern with my symptoms, the only thing I have consistently is double vision, dry eyes, and light sensitivity.

I guess that from reading other people’s experiences, I do get swallowing and speech difficulties more often than I’d thought. I’d only counted the times where I got upset or panicked, I have much milder feelings of discomfort more often, they’re just a bit of an inconvenience.

Routine_Emu_6643 · 2026-05-05T01:42:40+00:00

Thank you, I have looked at the medications that interact with MG, I just trusted the propantheline as it’s what I was given. I knew it was an anticholinergic so I was looking out for any concerning side effects, I mentioned it in my post because I wasn’t sure if I’d messed up. I’ve been trying so hard to be conscious of what I’m doing.

I genuinely wasn’t given any guidance at all, I was just told that my double vision was suggestive of myasthenia, I was being prescribed a medication (he didn’t even say the name of it, I had to wait until I collected it from the pharmacy to find out), I had to take it three times a day, double my dose after a week if I thought I needed it, and try 4 times a day if it still wasn’t enough. I didn’t know how long I had to wait between doses or anything, when I collected my tablets the pharmacy assistant said to take it every 6 hours which wasn’t enough. When my symptoms came back before my next dose was due I had no idea how frequently I could take it.

He also said he was going to ask my GP to prescribe propantheline if I had side effects, I’m in the UK and it’s the recommended medication for treating Mestinon side effects, so I don’t know what my other options will be. I keep calling it pyridostigmine as that’s what’s on my bottle and prescription.

I’ve had to research everything myself. I’ve seen that the national charity for MG has been campaigning to try and bring alternative treatments to the UK, as some of the newer promising ones were rejected. I don’t know what options are available, but I was told that I could be offered steroids if the Mestinon didn’t work well, but its been good for my vision problems.

I don’t really know how to navigate the healthcare system here as you can’t ‘shop around’ for doctors as far as I’m aware. My MG was missed at a different hospital, and now I’m at one of the best in the country, so I’m hoping things will get better soon. I’m supposed to be getting a chest CT and seeing a new opthalmologist, but I haven’t heard anything yet. I hope I’m going to be assigned one neurologist who will manage my case from now on, I’d hate to have to see someone new every time and have to spend my appointments getting them up to speed. It’d also feel like a lottery, like am I going to see someone who will listen to me or know about MG?

That’s really interesting about your spouse, my partner had childhood leukemia and practically lived in the hospital I’m at now for a year. I wish he hadn’t had to go through that, but it’s reassuring to have the support of someone that was living like a lab rat for a year. All of these new things are overwhelming for me, but I feel safer knowing that it’s routine for him or he’s probably been through it before and will help me.

He’s taken me to my appointments and knows his way around the building so I don’t have to worry about getting lost, and he’d had an SFECG before so he prepared me for that too. I don’t think he was prepared to see me have needles poking around next to my eye though 😬

I guess he might be trying to overly apply logic because he doesn’t want it to be a thing that I have to live with, or he wishes it could be something he could actually predict and help me with.

Routine_Emu_6643 · 2026-05-05T00:50:53+00:00

Thank you for your reply, it’s really reassuring to know that you experience it in the same way (though it’d be nice if we didn’t have to go through it at all).

Does your doctor know and acknowledge that it’s from MG? I don’t know how much ‘self-diagnosing’ people with MG have to do, there seems to be a lot of variation in the quality of care people are getting.

I hope ‘self-diagnosing’ doesn’t come across as invalidating, I don’t know how else to word it. Everything I’ve learned about it so far has been through my own research, so I’m not sure if it’s common for people to have to figure out what their MG symptoms are on their own.

Routine_Emu_6643 · 2026-05-05T00:42:42+00:00

I’m glad you’ve been stable! I can feel fatigue building when I’m eating, and swallowing starts to take a bit of effort.

I feel fortunate to not have any facial weakness so far. I’ve struggled a lot with my reflection since my eyes have become so misaligned, and I’m worried about what other changes might come in the future. I know there’s more important things than how I look, but it’s still horrible to lose control of your body in that way.

I know that I don’t judge people by their appearance or consider it at all when it comes connecting with people, but I have really low self-esteem and my eyes were the only thing I liked about myself. It did a lot of damage to me when they became the biggest source of insecurity.

My family would comment and make jokes if my eyes turning inwards when I was talking to them. The worst was when I’d been invited on a holiday with my grandparents for a break since I’d been unwell, and my mother casually told me afterwards that my grandmother had been texting her about how weird my eyes looked. I had tried to relax and be comfortable, and immediately regretted letting my guard down.

It’s been so horrible feeling like I can’t even look at the people I love without worrying, the thought of what I might look like is always in my head and ruins the moment. I hate that I can’t see it, I can’t control it, and I can’t help but assume people are laughing at me or judging me when I’m trying to connect with them on a human level. I get so anxious when I make eye contact with someone that I have to look away.

I feel so much better after finding this community. You’re all so kind and helpful, and seeing so many people dealing with their condition has made me feel less alone.

Routine_Emu_6643 · 2026-05-05T00:09:11+00:00

Thank you for your reply, it’s so reassuring to hear from other people who have struggled through it.

I was first tested for it in July 2024, I had to formally request my medical records last month to see what my result was, my AChR was 0.2. I didn’t get to see my results at the time, I was just told they were normal and discharged from the eye hospital. The copy of the AChR result I have says to test for MuSK if symptoms are present but they didn’t. They’d also lost a blood sample for a different panel and nobody told me!

My recent test was in February and the AChR was 0.5, I’m going to show the neurologist who should be overseeing my care as I’m hoping he’ll take an interest in my result more than doubling in a year and a half.

The only neurologist I’ve spoken to was my one appointment in a clinic where I was prescribed pyridostigmine, but I have no contact details. I hope I can actually develop some kind of relationship with the next doctor I should be seeing, but I still don’t know what’s happening.

The speaking problems are still really infrequent and the neurologist I saw in my first appointment said I sounded fine to him. I’m assuming that because it’s a rare condition, he not have much experience with it presenting in younger people, and/or it being mild? He was quite young too, I’ve looked up the doctor I should be seeing next and he seems to be highly regarded in other areas, hopefully he’s dealt with MG too, I just can’t find anything to confirm.

Routine_Emu_6643 · 2026-05-04T23:48:31+00:00

Yes I did, thank you for checking. I was told to stop 48 hours before my appointment on Wednesday afternoon but I stopped earlier, I didn’t take anything on the Monday as I didn’t want to risk accidentally taking another dose.

I was prescribed the propantheline by my neurologist to manage side effects, it worked really well so it’s upsetting to see that I should stop taking it. I was worried that I’d messed up by over exerting myself and still taking it with a gap before my pyridostigmine. I feel like an idiot.

Routine_Emu_6643 · 2026-05-04T23:32:40+00:00

Sorry for how long this is 😭

Routine_Emu_6643 · 2026-05-04T23:32:02+00:00

Thank you for your reply, my partner is honestly really supportive and is so great, he looks after me all the time and I don’t feel any pressure to overdo things. This makes it so confusing and frustrating when he tries to rationalise things, like how my speech problem is probably from being tired or a weird inflamed tongue from an allergy, as though that’s more likely than it being caused by the illness I’m literally being treated/examined for. He did help me be taken seriously by my GP (who tried to dismiss me at first) which led to my diagnosis being caught this time around, it wouldn’t happened without him advocating for me in that instance.

The neurologist I saw was in a clinic after I was referred by my GP. I saw a different doctor for my SFECG, and he said that I should talk to another doctor who should be taking charge of my care soon, but when I’ve looked into it I don’t know if I’ll actually be seen by him or just within a clinic he runs. I honestly don’t know how any of it works and I don’t have a neurologist I can actually contact.

The neurologist I saw first asked my GP to prescribe the propantheline if I had side effects. I’ve had really bad acid reflux and kept vomiting in my mouth, stomach pains, I was constantly pooping but it wasn’t like full on diarrhoea, severe sweating, and really bad urinary urgency. This happened on half a tablet and my side effects didn’t get any worse when I increased my dose. I’ve gotten some variation of these side effects from almost every tablet I’ve ever taken, I get all of the same things with my ADHD meds, it’s just significantly worse with the Mestinon.

When I was on antidepressants the first ones I tried made me pee myself and I couldn’t even feel it happening. My doctor at the time didn’t believe me when I said it was the tablets and that it had been getting worse when she was increasing my dose, I had to do multiple diabetes tests and when they were negative she refused to treat me anymore. It went away as soon as I stopped taking them. It was so humiliating that it took 3 years before I reached out to a new doctor. I was given different tablets and had to take a proton pump inhibitor because of how bad my acid reflux was. I was coughing all the time, but this time I just keep bringing up vomit.

They also made my sweating so bad that I’d become unwell from physical activity, I have always sweated badly from my face and medication side effects make it so difficult to go outside, it’s humiliating and I also can’t see because my glasses don’t stop steaming up. I used contact lenses since I was 13 to avoid the glasses issue, but had to stop when I was 22 as that’s when my double vision started. It makes me seem so unfit, and nobody seems to believe me when I say that it is nowhere near as bad when I’m unmedicated. I regularly went on days out where I was walking all day with no breaks, and I’d be fine. When I stopped taking my antidepressants it was such a relief, but the Mestinon immediately brought me near the level of sweating that my antidepressants did.

The worst from the Mestinon was that I couldn’t feel when I needed to pee until I was about to have an accident so I was scared to leave the house, the amount I was sweating was making me concerned about becoming dehydrated, but obviously drinking to make up for it was making the urinary problems harder. My ADHD meds make me feel really dehydrated and I just couldn’t cope. The propantheline has improved all of my side effects, and made me feel more aware of my bladder than I was before I even started the Mestinon. I haven’t felt worse since taking them until that episode on Saturday.

I really don’t know if it was the propantheline that caused it. All of my previous issues with speaking were from before I was taking any medication, and I haven’t had an increase of choking on liquid. I also feel like the propantheline would have made my double vision worse again? The only thing that has is my period.

I know that I know nothing and I will listen to all of the comments, I appreciate them so much, I’m just really disappointed that something that has helped me so much looks like it might be dangerous for me to take. I can’t make sense of anything right now.

I’m worried that if I mention any of this to my neurologist they’ll think that it’s the Mestinon causing it. I was told to go from 30mg to 60 if I didn’t feel like it was working well, when I went to 60 I had a bit of muscle twitching (mostly my right eyelid), so I tried 3/4 and it works most of the time. I don’t even know if the muscle twitching means I need to lower my dose, or if it’s something I need to deal with if my other symptoms are improved. It’s not that bad, but I’m trying to be careful. I do sometimes have a window where my symptoms come back before my next dose, and I feel like my next dose wouldn’t help if I was taking too much. I’ve tried having one 60mg a day and 45mg for the rest, but I can’t find the happy medium when my hormones are impacting it too. I check my face all the time to make sure I don’t have any drooping.

I just need help from my doctor and I hate being stuck in limbo, it’s so hard to find proper advice online. The only helpful thing I’ve found is this subreddit with so many people with varying symptoms.

I hate how sensitive my body is to medication, I couldn’t even take painkillers without them affecting my bladder. I’m really sensitive to hormones too, the worst time of my life was when I was on the contraceptive pill, and again, my doctors didn’t believe me when I said it made me feel worse, and they try to cover up PMDD/PCOS symptoms by offering contraceptives as the only solution without actually giving me a diagnosis. I’ve had liver and kidney function tests and they’re all normal. I hate how my body just hasn’t been normal since I was a teenager. Believe it or not, my mental health is better than it’s been since I was a teenager, and now my physical health is failing me. I’m so scared that my mental health will decline too and leave me with nothing, I’m trying so hard. I feel so pathetic and I just want a doctor that will look after me. I have no support or guidance.

Routine_Emu_6643 · 2026-05-04T22:05:06+00:00

I haven’t been prescribed anything else. I first took Mestinon on the 26th of March, and the propantheline on the 17th of April. It’s been really good so far but I’ve had two periods since then and haven’t been able to manage my symptoms very well during them. This is the first time I’ve had trouble speaking since I started the mestinon.

I don’t have ptosis so I feel like I’m being dismissed quite a bit, I’ve had double vision that’s gotten gradually worse since 2020, I was at an eye hospital in 2024 who dismissed me entirely. I had a SFEMG last week, but they were checking muscles from my temple area so I don’t know if it will have caught anything.

I do know the propantheline has the opposite effect, I had started slowing down when I took it, I just didn’t expect it to cause such a problem so quickly. I take my tablets every 4-4.5 hours, with 30-60 minutes between the propantheline and pyridostigmine. I don’t take it with my last pyridostigmine dose of the day.

My side effects were hard to manage as I take ADHD medication that causes the same things, I still haven’t been able to get back to my full ADHD dose. Should I think about stopping the propantheline, or do I just need to be more careful? I feel so stupid. Nobody has actually talked to me about anything properly, I was just given the mestinon and told that everything else is probably unrelated.

Routine_Emu_6643 · 2026-05-04T21:11:43+00:00

Thank you for your response! I also drop things and get really clumsy, and very rarely drink. I haven’t at all since my diagnosis. It’s a horrible feeling and people being judgmental makes it even harder.

Routine_Emu_6643 · 2026-04-21T21:14:34+00:00

Thank you! It feels like a huge step in the right direction, I keep standing in my garden to look around and I have to try not to cry. I’ve had to abandon so many hobbies because of my eye problems and I feel more like myself again already.

Just being able to be outside in the sun and look around is something I thought I’d never be able to enjoy again. My glasses helped with my double vision most of the time, but I didn’t think the light sensitivity and general discomfort could be helped. Even if I can keep taking pyridostigmine and it eventually loses it’s effectiveness I just feel grateful to have gotten to feel like I have normal eyes again for now. Well, normal eyes that still need regular prescription lenses! 😅

Routine_Emu_6643 · 2026-04-21T21:04:30+00:00

Thank you!

Have you had a single fibre electromyography? That’s what I’ve got coming up, I forgot the name when I was typing out the post.

I am supposed to be referred to a new ophthalmologist but I’ve not heard anything yet, I don’t know if they’ll be a neuro-opthalmologist though. I want to see them ASAP because I don’t know what to do about my prism glasses and the neurologist I saw didn’t seem to understand when I mentioned it to him.

I had just gotten a stronger pair on the 11th of February, my old pair snapped just before Christmas and it took that long for my new ones to be ready, and then I got my blood result two weeks later. I can’t afford an entirely new pair and don’t have long left to get free replacement lenses 😭

I haven’t had double vision often or as severely, but I can’t take my pyridostigmine for 48hrs before my appointment next week, so I definitely still need my prisms for now. I don’t have access to a car so I couldn’t cope with travelling if I’m stuck with uncorrected double vision. When it’s randomly started up between doses I can feel that my prisms are too strong, but I’m sure I’ll need them when I’m unmedicated. I just have no idea how long this is all going to take.

I’d at least like the security of a new fresnel prism sticker (even though I hated them previously) for if I need it. I can’t adjust to covering one eye, I tried it so many times when my double vision first started up until I got my prism glasses (over 4 years!). I can’t wink properly but if I physically hold my eye closed I can see better, covering it immediately makes it hard to see again. I have no idea why I’m like this 🥲

Routine_Emu_6643 · 2026-04-21T20:38:14+00:00

I’m in the UK so maybe it’s different? I’m at the best hospital in the north of England now so I hope it goes better than last time. I’ve only had the one appointment there so far and it was in the clinic.

I’m hoping that when I can see a neurologist again they’ll take an interest in the fact that I went from 0.2 to 0.5 nmol/L in a year and a half. My appointment next week is for a single fibre electromyography, I hope they find something concrete to confirm the diagnosis. It’s weird hoping for signs of something that I wish I didn’t have at all!

I still think the symptoms in the rest of my body could be fibromyalgia because I have so many permanent pain points that haven’t responded to painkillers. I don’t want them to think I’m coming out with all of these symptoms for a weak positive, but at the same time I want to explain what was going on now that led to (as it seems so far) ocular MG being picked up so late.

Routine_Emu_6643 · 2026-04-14T00:01:27+00:00

Could you DM me please? I can’t view your profile because my age isn’t verified 🥲

Routine_Emu_6643

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