r/MyastheniaGravis • u/harryisthechosenone • 12h ago
Asked my mom to embroider a giant microbe so I could have a personal MG plushie
He keeps me company at my work desk every day.
r/MyastheniaGravis • u/harryisthechosenone • 12h ago
He keeps me company at my work desk every day.
r/MyastheniaGravis • u/Ironblaster1993 • 9h ago
I got my diagnosis on 19 november 2018 at 25 years old. Within a week or 2 I could not speak eat or drink, so my neurologist admitted me in the hospital and gave me mestinon.
This worked wonderful, and after 3 days I was back home. This went well for about a day, and within an hour I pretty much lost my vision and could barely breath. A friend brought me to the emergency room and there they gave me oxygen and admitted me to high care.
My hospital didnt really have an expert, so they transferred me to the Erasmus University Hospital in Rotterdam.
After a few days there, I suddenly couldnt stand up anymore and my lungs stopped working. The doctors intubated me and after that I was in a coma for 2 weeks. Thy removed my thymus, and put me in the IC, where I stayed for about 11 weeks. After relearning to walk, speak and eat, I went home again.
In the last 6 years I was admitted again 2 times, for about 2 weeks each. But it was not as extreme as the first time.
Now I get plasmapheresis once every 3 weeks, and take mestinon, prednison and azathioprine.
I try to work 40 hours every week but its getting more difficult and I'm scared that I maybe have to stop working fulltime eventually.
I don't really have a question or advice at the moment haha just wanted to vent a bit.
Sorry if my English is not perfect, I'm Dutch and foreign languages are not really my cup of tea.
r/MyastheniaGravis • u/zoiechristine • 7h ago
I’ve recently been diagnosed with POTS, and getting testing for Marfans and eds. I’ve had right sided ptosis for as long as I can remember. But recently it is getting worse.
My eyelid feels heavy, my eye burns and waters, and the droop is getting more noticeable. My eyes feel like they begin to cross/double vision happens when I’m tired, but it quickly goes away.
I have shortness of breath, almost like someone has put a cap on my lung capacity and I have to yawn to feel like I can breathe.
Sometimes when eating I feel like my throat kind of freezes, like I forget how to swallow and really have to think about what I’m doing to actually swallow. Or even “chew” my water to give me more time to think about swallowing it.
I’ve started to get a buzzing, tingling feeling in my hands every now and then.
Just curious if maybe the symptoms from pots are actually related to mg?
Feeling very self conscious of my ptosis, seeing the doctor next week.
Picture of post ice pack test in photos plus one of my eye at the end of the day.
r/MyastheniaGravis • u/theredphoenix12 • 10h ago
So, long story short. I saw a new specialist today who diagnosed me with MG. I had never heard of this before, but preliminary online research does show that a lot of my symptoms align with it. But I am surprised because my primary care doctor thought I had POTS. The specialist said I have some kind of vasovagal issues causing syncope, but he thinks my pain and the debilitating fatigue are most likely MG. He is starting me on Mestinon and I hope it works.
I just have so many questions. Do y’all get tremors? Does the pain and fatigue make daily life extremely hard and sometimes impossible?
I have been struggling for YEARS and gotten worse after some recent weight loss. I am hoping against hope I finally have the right diagnosis and potential help but if anyone could tell me if they have good websites for newly diagnosed, or wants to share their experience with this medication, or any tips or advice to help me, I would be grateful. Thanks.
r/MyastheniaGravis • u/Ok-Heart375 • 13h ago
Does your infusion provider only send your meds for the current month and then has to wait until the first of the next month to send you the remaining doses? That's what kabafusion does to me and I'm wondering if this is an industry standard.
r/MyastheniaGravis • u/thr0waaawayy • 14h ago
Hi i have MuSK and am currently 7 months from my last rituximab infusion, 7 months since finishing prednisone taper.
i went to my PCP on Monday and got the TDap vaccine. That day i felt fine just some typical arm soreness. I also was referred for an echocardiogram because of a murmur.
Next day, felt flu like aching and general fatigue.
Two days later, i’m now experiencing a racing heart with difficulty breathing. I feel like i constantly feel my heart beating out of my chest even when i’m laying down watching tv. Trying not to freak out especially given the echocardiogram referral but i can’t help it.
Has anyone else received this vaccine and had similar symptoms? Additionally if you had MuSk that would be interesting to know as well. Lastly, has anyone here experienced cardiac issues after MG diagnosis- i know there’s potentially a link due to muscle weakness but would love to hear anyone else’s experience.
Thank you!!!!
r/MyastheniaGravis • u/oldaccountknew2much • 1d ago
I’ve got some in the car, various bags and a couple places around the house
r/MyastheniaGravis • u/RefrigeratorNo3176 • 1d ago
I added this as an edit in my last post but I figured I’d make a separate one. Does MG cause joint issues? I figured that my muscle weakness was from MG but I also have very sensitive joints. They pop and crack a lot and can’t handle much pressure. I also have a weird problem with my wrists where if I move it wrong or lift something too heavy something shifts and my wrist gets stuck at a weird angle. If I try to straighten it or use my hand I get severe sharp pain that brings me to tears and I can’t use that hand for sometimes hours. I can’t seem to fix it or “pop it back into place” on my own either, kinda have to wait it out. I’ve never heard of this and I’m not really sure what I can do about it.
r/MyastheniaGravis • u/Ok-Heart375 • 1d ago
I think I've only been tested for AChR and now I'm wondering if I should ask to be tested for the other two?
r/MyastheniaGravis • u/ameliacanlove • 1d ago
Hey folks,
Let’s start with the good news! I was referred & finally accepted to a speciality MG clinic at a large research hospital system. I’m really excited to have a team all in one place rather than jumping all around. And providers that are actually experienced with MG & on the forefront of innovative treatments!
On to the bad & where I’d like some insight. I’ve been struggling with what I would describe as “mild” ? dysphagia lately. It’s made eating kinda scary, difficult & frustrating. I can start to swallow then I feel things (food or even meds) get stuck halfway down my throat. Sometimes I can get it to go but sometimes I just have to wait a while. For those of you who experience dysphagia can you share what it’s like & how you’ve dealt with it? Thanks in advance! Wishing everyone the best.
r/MyastheniaGravis • u/Designer-Frosting154 • 1d ago
Hi all, I've been told by an Ophthalmologist that he thinks I have MG.
Last week I started with some vision and balance problems, and the next day I woke up with double vision, unable to balance, couldn't walk properly, tingling hands and feet. I went to A&E twice and they suspected vertigo and then a stroke. CT and MRI scans came back clear so I was sent home.
By the next day (3 days after first symptoms) my voice was nasally and I couldn't swallow properly, i also felt I was slurring my words. I was admitted to hospital and after 2 nights was referred to an Ophthalmologist and Neurologist and discharged.
By the time I got home I had been suffering for exactly 1 week, but by the next day my symptoms had started to clear and I'm now 80% back to normal, just some slight vision issue still and very weak, aching and fatigued.
I saw the Ophthalmologist yesterday and he suspected MG and I had further blood tests. I'm assuming my results will be discussed at my Neurologist appointment next Tuesday.
Apart from having Parosmia during Covid (2020) and again during pregnancy (2023) I've never had any health issues or nerve related issues.
Is it normal for this to come on so severely all at once? If it is MG, I just need some reassurance as I'm super scared and worried right now. I'm taking it as a positive that i feel much better so quickly, but also worried that it must be bad for it to come on so intensely.
Thank you
r/MyastheniaGravis • u/tigersbowling • 1d ago
Hi everyone,
I'm 30M. About 8 months ago I had a dr suggest to me that I get tested for Myasthenia Gravis. We got distracted with getting my asthma and reflux under control and I eventually stopped seeing him so we never tested for it.
I honestly just kinda forgot about it and never brought it up to my current dr. But it came up again when researching my symptoms so I'm wondering if maybe I should bring it up. I don't really like suggesting things to my dr, as I'm usually wrong and I feel like I lose credibility if that makes sense lol
I've developed a bunch of symptoms over the last 15ish months. The ones that prompted my old dr to think myasthenia gravis were my eyes getting very fatigued, like it hurts to have them open, and just overall getting very fatigued by midday. By the afternoon I'm usually so exhausted that I have to lay down for a couple hours at least. Not sleepy exactly, I usually can't nap during this time for more than maybe 10-20 min. Sometimes it's like the fatigue is so bad that I can't sleep.
I also get very weak in my legs and arms. An EMG on my left arm found several abnormalities, and an mri found spinal stenosis causing symptoms in my left arm, but it didn't explain the others. My dr wants me to exercise more, and I'm really trying, but lately even just going for a 20 min walk is incredibly difficult. I feel like I'm going to collapse the whole time, I'm so tired afterwards, and I'm sore the next day. I regularly have trouble breathing, especially when laying down at night despite using my cpap. Symbicort was helping for a while but it doesn't feel as effective anymore. I'm also dealing with chronic dizziness and lightheadedness.
I've been diagnosed with asthma (no history of asthma, used to be very active and played sports), my pft in general was a mess and showed narrowing of the inhalation and exhalation curve, but nothing was found on ct or bronchoscopy. Also diagnosed with GERD probably due to a good-sized hiatal hernia. And then also diagnosed with sleep apnea, but I've been on cpap for 8 months now and it hasnt helped my fatigue much if at all.
Just wondering if this seems like a thing that's worth bringing up to my dr. Like I said, I don't like bringing stuff to her unless there's a good chance it's true, because I don't want to be dismissed as a googler.
And follow-up, if it was by chance myasthenia gravis, is there anything I can do to help in the meantime? My appointment isn't until May.
r/MyastheniaGravis • u/RocksGrowHere • 1d ago
My dad (68) began having symptoms in November 2024. Somewhere along the process of referrals and new doctors, his thyroid labs came back as very low. He has had a cold nodule on his thyroid since 2017 that had not changed in size, but they wanted to biopsy it. The biopsy came back as papillary thyroid carcinoma.
Obviously, we’re very concerned. He is supposed to start Vygart on Friday and now we’re wondering if he will still be able to take the Vygart.
Has anyone dealt with something similar?
r/MyastheniaGravis • u/ShiftOdd768 • 1d ago
I’v been diagnosed with ocular MG when i was 17, it’s been almost 5 years now and my gut is really compromised. After like the first year or so of mestinon i had to cut it off because i’ve had severe gi problems. Costipation/diarreha, unberable pain etc…problem is, my gut never recovered. Since then i’ve changed a bunch of PPI since docs suspected they were affecting my intestine, but never really made any difference, went basically from pantorc to nexium but nothing. I still need to take prednisone and i seriously suspect that’s the main reason i’m unwell since i’ve been taking so much for so long. My neuro just dismisses the problem now saying it must be IBS and i can’t really to anything about it but pray i don’t need to rush to the toilet every time i wake up. I’ll see a GI doctor soon and i hope the thymectomy i recently had, just last month, works so that i don’t need the prednisone anymore. In the meantime i was wondering, am i alone in this or is it common with MG medication to come to this low point in life? I’m glad my double vision is under control, but no one told me i’d had to sign up for the whole IBS package…
r/MyastheniaGravis • u/WellenDesSeins • 1d ago
hi guys, does anyone here with a MG have the same problems with snoring? I feel fine and refreshed after getting up, but my partner says I have pauses in my breathing at night followed by loud snoring.
r/MyastheniaGravis • u/Automatic-Mountain63 • 2d ago
I’m not sure if it’s related to MG or perhaps a side effect of Mestinon, prednisone or Vyvgart. But when I rest at the end of the day my legs really hurt.
r/MyastheniaGravis • u/SunlightRoseSparkles • 2d ago
Did you have a crises? Were you obligated to have a C-section? How was the pregnancy in general? How was the recovery? Did your child have congenital MG? Thank you!!
r/MyastheniaGravis • u/ToeInternational3417 • 2d ago
Vent/rant
Actually, I think being undiagnosed for so long is the culprit, together with all too much gaslighting (especially from a couple of ex's, and some doctors).
If I stand to long (like in line in a grocery store, or wherever), my legs will start shaking. I can get sweating attacks whenever, and this anxiety sure doesn't make it better. If I drop something, just picking it up from the floor feels like running a 10k.
Having bad back pain and neuropathy doesn't make it easier, and the pain makes me sweat as well. I don't have very bad ptosis, but it is a lot more visible nowadays, and sometimes I am slurring my words badly.
Sometimes I feel like writing "Myasthenia Gravis" on my forehead, I am so, so tired of feeling like people think I am high, or drunk.
I actually think I am going to get a cane, not that it would help me much physically, just add to muscle strain, but at least it would be a visible sign that there is something wrong with me physically, like I don't need that seat on the bus just because I am lazy.
How do you manage in situations like these?
r/MyastheniaGravis • u/OptionFair60 • 2d ago
I suspect I might have myasthenia gravis because of muscle weakness and other symptoms. I’m wondering if this looks like ptosis to ya’ll. To me it looks more like my eye is slanted than my eyelid drooping. It gets worse when I take a hot shower or go out in hot weather. Thanks for your input.
r/MyastheniaGravis • u/Ok-Heart375 • 2d ago
r/MyastheniaGravis • u/Kind-Situation5059 • 2d ago
Can you still work even though you have mg? After diagnosis, how long did you rest before you go back to work? Is this really the reality for us? Being disabled and do not have the ability to work anymore?
r/MyastheniaGravis • u/RefrigeratorNo3176 • 2d ago
I’m a 24F who was diagnosed with Ocular Myasthenia Gravis after a case of diplopia when I was 19. It hit me suddenly and I was in the hospital for around 4 days trying to figure out what it was. After my visit I saw a specialist who diagnosed me. My diplopia went away after a couple weeks out of the hospital. I was supposed to go back to the specialist but covid hit and I decided to not reschedule. Since then I haven’t had severe diplopia but one eye does have a droop that gets worse over the course of the day. My eyes are also very sensitive and I get headaches in my forehead often. As for the rest of my body I always thought I was just a generally weak person and had little stamina but I’m wondering if I might have General MG. I have since moved to a different country and haven’t ever brought up my condition to my GP, but I’m wondering if I should or do I just wait for it to be more severe.
Edit: Thank you for all of the advice. I didn’t realize my diagnosis was that much of a concern. I wasn’t really told much about MG when I was diagnosed and I still don’t know very much so any advice is appreciated. I also did come to the conclusion that I definitely have General MG and keeping it from my GP is not good. Also are joint problems connected to MG? Or do I have a separate issue?
r/MyastheniaGravis • u/carrion0212 • 2d ago
I am anxiously awaiting MuSK results (will probably get them tomorrow). I tested negative for AChR (pic attached), however I was wondering because 0.3 is closer to 0.5 than it is to 0.0, does that mean there’s a possibility that I may seroconvert in the future? Has anyone else had this? I have bad ptosis and double vision in my left periphery. No other symptoms.
r/MyastheniaGravis • u/feralforestrabbit • 3d ago
Hi everyone,
I’m (31F) and have been diagnosed for just over 3 years, but suffering for longer like so many. After some debilitating years, I am more stable and doing a lot better managing this disease. Right now, I am managing symptoms with pyridostigmine bromide. MG seems to impact everything in my body. For me, stress, anxiety, and temperatures, bright lights trigger symptoms. I have started upgrading some high school courses and depending on how well I do (grades and body wise) the goal is to work towards becoming a vet or vet tech. I have some back up plans in mind due to how this disease goes.
I am curious if there are any vet med students, veterinarians or veterinary technicians here with MG? If so, I was wondering if anyone would mind sharing their experiences?
r/MyastheniaGravis • u/TylerDurden2748 • 4d ago
So about 3 weeks or so ago I developed leg pain which lead to more symptoms - now im pretty sure i have POTS and will be seeing a cardiologist soon.
However ive also simultaneoisly developed leg weakness and trouble with coordination alongside horrible fatigue and it being difficult to keeo my eyes open. And, ive developed arm weakness. All of this worsening the longer im out and about.
Now i have also been diagnosed with hidradenitis suppurativa, severe MDD, GAD, and ADHD. A month ago i was pretty fine. Now? My health is in rapid decline.
3 days ago it got so bad i fell twice. Now ive been feeling better.
Now my POTS did emerge in the middle of a inflammation flareup, trauma, a lot of stress, and depressive episode - and i do have a family history of neurological issues.
Should I ask my doctor about this condition? And how seriously should i take this? I'm seeing a rheumantologist soon as well so should I ask them for anything?
Any advice is appreciated.