Hi all. I’m a 29m (uk) and while suffering from burnout during the summer my GP noticed I had a slight ptosis (which looking back at photos I’d had on and off for 18 months or so) and put me forward for some more tests which (out of the blue for me!) ended up with a diagnosis of myasthenia gravis.
I feel pretty lucky that it’s definitely at the very mild end of the spectrum but beyond diagnosing they’ve pretty much left me alone and said ‘I’ll know’ if it gets worse.
Since my wife was having a difficult pregnancy and work was crazy, I parked it and just ignored it.
My eye sight has got a little worse and I now need glasses for driving (no double vision) and feel tired and achy. But with a 9 week old baby who thinks long sleeps are optional. Being tired is par for the course!
I can’t really find anything online about the early progression or how you differentiate fatigue from tiredness. So thought I’d put it on here and see what came back?
Particularly any experiences of starting mild as an adult and what happened in the months / years to follow.
Thanks =]
Hey there. I have CMS (congenital myasthene syndrome) and since going to school I always struggled with my weight. I‘m currently 22, have an office job and not much time to do anything after work (at least it feels like that). I went for walks in summer because the sun went down a lot later than now. I find it so hard to lose weight when you can’t workout whenever you want and you have to think whether you will have enough energy and time to shower after working out at home. Is someone else there struggling with the same problem and has found a way or can give any small advice? I know it needs time and patience but since I‘m overweight it would just be easier to lose fat sooner (not faster) to make it easier for me moving. I feel like I already read everything about weight loss but I‘m just kind of desperate for anything to work/help. Thanks for any advice in advance!
I know it's ironic to have a mild case of myasthenia gravis since it literally translates to severe muscle weakness. However, I'm wondering if I could still have it even though I don't have ocular symptoms or usual symptoms such as not being able to raise my arm above my head.
My main concern would be rapid fatigue. It's more like starting with an energy level of 90% then dropping to 20% after a minute of exertion such as washing dishes or speaking. I also have trouble with speech i.e. pronunciation or fluency.
Generalized myasthenia gravis just seems so rare but I do have Hashimoto's (under control with medication) which increases my chances of having it.
Does anyone else have a similar manifestation?
Hello all,
I am currently in the process of being diagnosed with myasthenia gravis, due to having nearly all the symptoms (trouble swallowing, muscle weakness, vision problems, ptosis, etc...) but I also suffer from SVT (supraventricular tachycardia), which has made my heart rate go up to 176 beats per minute and I had to get my heart restarted once. I've had SVT since my late teens and I am 21 almost 22 now. I can't find any information if this is common to have both a heart condition and MG, but I also know MG is pretty rare. So I am genuinely curious if anyone else has had similar health issues as me?
I am currently undergoing a diagnostic process for my varied (seemingly neurological) symptoms. One suspicion seems to be Myasthenia Gravis. And that's why I wanted you to ask the following questions:
- in what situations or under what circumstances do your eyelids or does your eyelid droop?
- does an ice pack help? And if so, for how long do you put an icepack on your eyelid for it to work?
- do you experience double vision or blurred vision?
- in what situations or under what circumstances do your arms or hands get weak?
- in what situations or under what circumstances do your neck muscles get weak?
- Does your jaw drop? In what situations and under what circumstances does it droop?
- Do you experience excessive daytime sleepiness or unusual fatigue sometimes throughout the day?
- do you slur your speech sometimes or have trouble speaking? How does it manifest, and under what circumstances or in which situation does this happen?
So, those are all muscle weakness symptoms that I get, plus the extreme sleepiness and/or fatigue. My eyelid generally drops with stress and after a day of a lot of physical activity.
An icepack does nothing for my eyelid droop. I had experienced blurred vision once when I was really sleepy, but that's it. So, it was not a double vision.
My arms, hands, neck, and jaw muscles sometimes get weak, especially when extraordinarily sleepy or tired after a lot of physical activity but combined with stress and/or frustration. And sometimes, they just get weak in specific situations, especially when taking public transportation or being a passenger in a car. The same goes for my slurred speech.
I will undergo some tests soon, but I just wanted to get people's experiences with Myasthenia Gravis since there are always nuances to the presentation of symptoms. Both the doctor and the patient need to be clear about the presentation of symptoms.
While my eyelid droops with stress and/or physical activity, the other muscle weakness that I experience happens mainly in a specific situation: being transported (bus, metro, taxi, etc.). I haven't heard that being a feature of Myasthenia Gravis.
They believe that I have MG. I have MS and there is no doubt that's what it is. The doctors are confused at how I may have BOTH.
Yesterday I had an EMG which was 100% normal. Is that normal for people with MG or is this a sign that it's not MG?
Thanks in advance for anyone who has something to share. I really just want to feel better. Grasping at whatever answers I can right now.
Specifically, were you/are you on meds? Were you able to get off the meds? What was your process?
My kids dad tested positive, didn't tell me and brought both kids 12 and 9 back to me sick 4 days ago. I tested positive today and my oldest goes in to get the test tomorrow. Guaranteed they both have it as well.
I have Myasthenia Gravis. I was diagnosed 9 years ago after my second child was born. I quickly got a thymectomy and was pretty much in remission until recently. I got the first Pfizer dose end of May but my MG symptoms got so bad I had my first Myasthenic Crisis, my son had to call 911 because I almost stopped breathing. I was terrified to get the second shot.
I'm double insured but couldn't and can't for the life of me obtain a neurologist or PCP. My previous neurologist has since retired and it was entire days of calling around getting no where. I have no idea what to do.
I'm ok for now. Bad headache and chills. Do I just wait til I can't breathe and then attempt to get a bed at the ER? I'm on day 3 or 4. Everything I read says Oregon hospitals are maxed.
Should I bother calling the kids pediatricians? What, if any treatments are there for kids?
Also what's the easiest way to make a will? I'm a single mom with full custody.
So my sister is the COVID long hauler but we talk daily so I am very involved in her situation. Like many of you, she has been to neurologists and rheumatologists, and many other doctors. She has had a myriad of tests including an MRI and no one has been able to get to the bottom of anything.
Her main complaints change weekly but the continuous issues are problems catching her breath and breathing in general, very, very fast heartbeat, and now the last few months her entire body aches from her hands to her toes and everything in-between. Now the last week and even before this diagnosis she has been noticing muscle loss.
We are an extremely healthy family and everyone lives well into their 90s with no health problems at all and my sister is usually super happy and ultra positive and happy go lucky but it is hard for her to put on a happy face now. Luckily she works from home so her boss doesn't know any of this and she can mask it. But she is putting on a conference in a week and it is in person and she has to fly to Atlanta. She doesn't know if she can get through 4 days and she is deathly afraid her boss, the founder of the company, will find out.
Has anyone else been diagnosed with Myasthenia Gravis since the vaccine or even just since having COVID?
I don't know what exactly I have but something is wrong obviously. I am 33 years old male. I have got Dysautonomia and Raynauds disease diagnosis, but I wonder if I can also have myasthenia gravis, because some mild symptoms of myasthenia occurring in my body after the combination of stress/heat and physical exercises. I can walk 10km per day and run 2km per day, but I have a trouble with squatting and pushups. There are some days when I do 20 squats, 10 pushups and I start experiencing swallowing problems, tightness in the throat, some breathing difficulty. If I continue to stress and push myself and ignore this symptoms and don't rest I am starting to have an extreme weakness to the point that I can no longer walk/slurry speach/and habit to support my head when I am eating because it feels heavy. But all this symptoms occur only if I ignore them and keep pushing myself. If I have a few days rest I don't feel any of the symptoms. And then If I don't do stressful exercises and do just walking/bicycle, symptoms never occur. Also I don't have vision problems and droopy eyelid. So the question is: may I have a mild myasthenia gravis when symptoms occur only after some exercises (not cardio, but rather squatting/pushups/some heavy lifting?) or my symptoms are due to my dysautonomia because Dysautonomia people also may have this symptoms. Also btw first swallowing/breathing/weakness symptoms I started to feel 10 years ago and since then it didn't got worse. I want to start going to the gym, but I cannot even increase the number of pushups or squatts. There is a limit that I just cannot brake through no matter how hard I try. If I do more I am starting to have some dysautonomia and/or myasthenia symptoms... BTW. Sorry for my English. Its not my native language. Thanks.
I have MG. I had the thymectomy and was on steroids and Mestinon about 3 years and finally my doc said I could get off of them this past May since I hadn’t had any symptoms. About a week ago I started feeling that face mask/ paralysis and called my doctor. I got back on Mestinon to see if that would be enough to stop the symptoms. Has anyone else come out of remission with MG? I’m freaking out a bit. I can’t go back on disability due to inability to talk again.
Any insight is appreciated.
Does anyone have experience with droopy eye? I've had my TT, never had TED but had a terrible case of Graves. Went to my endocrinology appointment this week and apparently, I might have Myasthenia Gravis. Sometimes my right eye is a bit droopy, but sometimes it's not. Either way, I'm going to a specialist next week.
Does anyone have any experience with this? NGL, I'm feeling a bit cheated by the universe, I was supposed to be rid of Graves by now...
Well nothing much to say. I am just 21 yrs old. Guess I will just suffer till I just. I suppose some people are not supposed to live long enough, I just never thought I would be one of those.
Just wanted to share I guess. Currently just trying to keep my brain/thoughts and live like that as I can't take it. I just can't. I can't just man up. It's unfair. I am just rambling now so I will stop.
2 rare autoimmune diseases. What a life.
49F, BMI 19, W, USA, Myasthenia Gravis. Medication: Pyridostigmine
I know this is probably a dumb question, just need reassurance.
I plan to get the Covid vaccine Tuesday morning (Pfizer). Due to the holiday weekend I don't think my neuro will be available via patient portal, plus it's not an urgent question to bother her with.
Anyway, is it contraindicated if you have MG, or am I good to go?
cross post for visibility
Hello all,
I am currently in the process of being diagnosed with MG, due to presenting all the symptoms (difficulty swallowing, muscle weakness, ptosis, etc.) but I also suffer from SVT (supraventricular tachycardia) which has made my heart rate go up to 176 beats per minute and I had to have my heart restarted in the past. I have had SVT since my late teens, and I am 21 going on 22 now. Interestingly enough, I also found out beta blockers could cause MG symptoms to be worse? I take metoprolol and it manages my SVT pretty well for the most part, but I do have ongoing MG symptoms. I can't find info anywhere if it is common to have the two, but I also know MG is pretty rare. Just curious if anyone has had similar health issues as me?
I don't know what exactly I have but something is wrong obviously. I am 33 years old male. I have got Dysautonomia and Raynauds disease diagnosis, but I wonder if I can also have myasthenia gravis, because some mild symptoms of myasthenia occurring in my body after the combination of stress/heat and physical exercises. I can walk 10km per day and run 2km per day, but I have a trouble with squatting and pushups. There are some days when I do 20 squats, 10 pushups and I start experiencing swallowing problems, tightness in the throat, some breathing difficulty. If I continue to stress and push myself and ignore this symptoms and don't rest I am starting to have an extreme weakness to the point that I can no longer walk/slurry speach/and habit to support my head when I am eating because it feels heavy. But all this symptoms occur only if I ignore them and keep pushing myself. If I have a few days rest I don't feel any of the symptoms. And then If I don't do stressful exercises and do just walking/bicycle, symptoms never occur. Also I don't have vision problems and droopy eyelid. So the question is: may I have a mild myasthenia gravis when symptoms occur only after some exercises (not cardio, but rather squatting/pushups/some heavy lifting?) or my symptoms are due to my dysautonomia because Dysautonomia people also may have this symptoms. Also btw first swallowing/breathing/weakness symptoms I started to feel 10 years ago and since then it didn't got worse. I want to start going to the gym, but I cannot even increase the number of pushups or squatts. There is a limit that I just cannot brake through no matter how hard I try. If I do more I am starting to have some dysautonomia and/or myasthenia symptoms... BTW. Sorry for my English. Its not my native language. Thanks.
Well nothing much to say. I am just 21 yrs old. Guess I will just suffer till I just. I suppose some people are not supposed to live long enough, I just never thought I would be one of those.
Just wanted to share I guess. Currently just trying to keep my brain/thoughts and live like that as I can't take it. I just can't. I can't just man up. It's unfair. I am just rambling now so I will stop.
2 rare autoimmune diseases. What a life.
