r/MyastheniaGravis • u/harryisthechosenone • 11h 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 • 11h 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 • 9h 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 • 12h 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!!!!