Anyone taking Ultomiris?...I’ve had (2) IVIg treatments and will have one more next week. I will be starting Ultomiris in May and going forward. Can anyone share experiences with this treatment? Whether...reactions3repliesTreatment
Slurred speech...Does anyone have slurred speech feeling that your tongue is numb or burning? If so, what was prescribed to help?...reactions2replies
Is it Myotonic Dystrophy or MG...Hi--I feel so envious of all of you who have caring doctors and help with your symptoms. I'm 74 years old and it took over 10 years, numerous blood tests...reactions4replies
My Postpartum MG Flare-Up...My baby is now almost 2 years old and I’m still managing a flare that came on 1-year postpartum. I was also very well managed with just 3.5mg of prednisone...reactionscomments
anyone get glasses for your double vision?...My opthamologist who diagnosed my MG wants to stay involved in my treatment, he was saying he would do botox on my eye to make the muscle wake up that...reactions2replies
Experiencing drooling ...Has anyone experienced drooling after being diagnosed with MG. Over the past three weeks I've noticed that I will drool off and on through out the day. It's very frustrating...reactions1replySymptoms
A little denial ...Hi, I was diagnosed in January 2025. I have been on Mestinon 60 mg 3 X a day. At the end of November, I started having increased blurred vision and...reactionsrepliesNewly Diagnosed
Is a wheelchair in my future?...I am 75 with a moderately controlled case of gMG. I can still walk around the house. I can go outside and go to small stores on a rolling walker...reactions4repliesAssistive Devices
Vyvgart vs Ultomeris ...I have to switch from my current IVIG to either Vyvart or Ultomeris. Has anyone tried both? Had success or concerns with either of them? Any feedback would be appreciated!...reactions5repliesTreatment
Active 3 days agoHarder to hold head up...I don't know if this is just a temporary thing (as in bad sleep position), but lately I get soreness in my neck or left shoulder blade area after spending...reactions2repliesWeatherSymptomsTriggers
How do caregivers know the treatment provided by physicians is the best and most correct? ...My husband of 53 years passed away from MG after doctors fumbled around attempting to find ways to treat this disease, putting him through months of in-and-out of the hospital...reactions3repliesTreatmentTriggersCaregiving
freezing this winter...Any one else freezing this winter? Read where folks have problems with the heat, but I am having problems with cold. Wife keeps the house about 70, and only time...reactions1reply
My neck gets so tired and tight....I have mg. Dr will say that there isn't any pain with mg. Than why does my neck and shoulders hurt so bad? It's like I've been trying to hold...reactions7repliesMuscle WeaknessAutoimmune Diseases
Colitis-possibly from Prednisone or IVIG...I just finished my second round of IVIG and spent the day in the hospital the next day. I was diagnosed with Colitis. ER doctor said it could be from...reactionsrepliesTreatment
I’ve been recently been diagnosed with MG and I am overwhelmed. ...I never think I would taking the medicine prescribed. I feel I am having Chemotherapy and the side effects scare me....reactions5repliesAwareness
Swallowing-Lungs-kidneys with Myasthenia Gravis ...I have lung failure with my Myasthenia Gravis. I use to be incubated due to the failure. When nonvolatile acids that are usually moved by the lungs, and must be...reactionsrepliesAutoimmune DiseasesCrisisTips & Advice
Hearing Aids...I have vision problems with MG, now I find out it is the reason I need Hearing Aids....reactions2repliesAssistive Devices
Occular MG moving into generalized...Hi, Diagnosed with MG after double vision and thymoma discovered in 2018. Thymoma was removed and I went on Mestinon. Eyelid improved but in 2020 i stopped taking the Mestinon...reactions1reply
Meds for ocular myasthenia gravis...I developed double vision and a droopy eyelid direction after my 2nd cataract surgery. It took 7 months and 5 providers later to diagnose my ocular mg (no other generalized...reactions12repliesTreatmentOcular MG
MG Conference ...Is anyone going to the MG Conference at the end of March? Has anyone ever attended one before?...reactions5repliesAwareness
