Current State of Treating, Managing Myasthenia Gravis 

I was diagnosed in May 2022. I consider myself very fortunate compared to others with MG. Without meds I would have double vision and the droopy eye. I have had no problems with that since August 2022. My arms and legs do get weak very quickly and at some point I'll probably have to use a walker but compared to others who are hospitalized sometimes every month and ventilated or near choke to death, I can live with it.

Excellent talk Dr. Small! I was one of your first neurology residents and have been treating myasthenia patients for over26 years in SC. I learned from a great group of neurologists at Allegheny.

I like this guy. He gets it.👊

I cannot believe I heard him say there are, at times, some who cannot walk! I'm grateful mg manifests in weakness (debilitating) in my proximal limbs and trunc/hips, rather than my diaphragm. Sadly though, weakness in these body parts, rather than diaphragm, is not taken seriously since it's not life-threatening--one can still breathe. But, my quality of life is extremely poor due to being homebound now, and I'd require a motorized wheelchair with a car to accommodate it, to leave my house. Apparently, one needs a different neuromuscular disease diagnosis for insurance to pay. I refuse to go to a nursing home for myasthenia gravis, since I only hear how manageable it is, and how people lead normal lives with it.

I've been diagnosed since 2007 after 8yrs of misdiagnosis 😢 hell! I opted to do the thymectomy in 2009 & honestly my symptoms haven't changed, if anything, they've become WORSE with multiple/COUNTLESS MG Crisis'! Pyridostigmine is the only reason why I'm able to move right now! It's so hard to make it to Drs appointment's because I get extremely anxious beforehand which makes me bedridden, unable to move @ all so ever since COVID-19 I've been without a Dr & I've just run out of my rx & have been trying to find out a way to get a new prescription without needing to leave the house so that I can regain my strength and go to a Drs office once I find a new Dr here in New Orleans. God bless you all living with MG & I 🙏 that you all have a better experience living with this waking nightmare of a disease! #MGStrong💪 #MGsnowflake❄️ #FUMG🖕

I have had MG for 9 years. Started with a drooping eye but within a week the eye closed completely. Living in Nashville I was lucky to be diagnosed within 3 weeks. My other eye closed on me while driving to work about a month later. Had to hold eye open to get off road and call for help. At one time I had 14 different symptoms. Main problems were eyes, chewing, swallowing , breathing, voice and talk not understandable, double vision, facial muscles and could not smile. Never had issues with strength in hands, arms, or legs. Was in Vanderbilt hospital 4 different times. Lots of infusions at Tn Oncology. Eventually at Vanderbilt I had 4 days of plasma exchange which help tremendously. Have been in remission for about 18 months but still have days when swallowing is an issue. Have had surgery on both eye lids to raise them and will have one eye done again next month.

When you get to the point of not being able to swallow, then it is time for IVIG. Heard this was a miracle treatment.

Pls share the exercise video

I am the patient of MG since last 7 months but after the diagnosed I am fine by the grace of almighty Allah and good doctors and proper medication. If the patient is not recvoring it should be considered on its care and medication and might be possible your doctor are not treating you properly so never compromise in any disease

I am in Scotland. I was diagnosed with MG in July 2021 at the age of 52. Initially a droopy eyelid and double vision, I was prescribed Mestinon. I now have problems with swallowing, eating, speech, balance, falls and severe fatigue. I still have my job in the emergency services, doing shift work. My breathing is fine. I have not had a thymectomy, or plasma exchange. Just in the past 2 weeks (July 2023) my eye has returned to normal and is not drooping. I still have double vision.

Hello does this new medication work on congenital myasthenia gravis ?

My brother has Mesenchymal Gravis (MG). Can someone please tell me if there is eye treatment or not? Please tell me if anyone knows

What if you have Medicaid in another state?

My ivig is octagam and I can't afford it.its 26000 every 3 weeks

As we all know that MG is an autoimmune disease thus we have to suppress immunity for that Retuximabe is a great option

He doesn't mention seronegative MG. Interesting.

Is there a chance to get into remission?

Why does he not ever mention that Soliris cost about $400,000 a year, and Vyvgart about $225,000 a year... UNTIL YOU DIE!

Where is this doctor? My mother has this awful disease

This is a matter of fact presentation which is worse than useless. Typically doctors do not address the cause and alleviate the symptoms - There are options with diet and supplements that assist in dealing with this and don’t cost $100,000’s. He would be the very last person I would see. I have had this condition a while now without realizing, it was misdiagnosed unfortunately - it got worse - but hey, it’s a relief to know what is going on. I upped my vitamin D/K2/Zinc/B1 ( D2 - 50,000 units daily😊) I stopped feeling exhausted in 1 hour. Minimal cost and easy. I don’t know if you get frightened to swallow as I do - chewing far more these days. Might look at 1 blended meal a day. Walking more and hope to learn to manage this, the exhaustion is horrible and my heart goes out to all of you who are in worse shape than me. Cut Out Carbs intermittent fasting and keto works, it’s cheap if you slow cook the cheaper cuts. See Dr Berg on auto immune diet. Wishing you all the very best. Bob❤

I got diagnosed October 2021 when I was 14 I'm now 16 but getting that diagnosis was literal hell, it's definitely rare the doctors sent me back 5 times till I got the majority of muscle weakness throughout the course of spring and summer. The last straw was not being able to swallow and holding my head up. It definitely can get scary but I wish anyone and everyone with MG best of luck and you can get through it!! 🫶🏼