Myasthenia Gravis Foundation of America (MGFA) is the largest, leading patient advocacy organization solely dedicated to finding a cure for the rare neuromuscular disease myasthenia gravis (MG) while improving the lives of people living with MG. More than 70,000 are diagnosed and living with MG in the United States alone. Those with myasthenia suffer with profound, debilitating physical symptoms such as extreme fatigue and muscle weakness that impact a person’s ability to see, swallow, smile, walk, or breathe. MGFA is focused on funding the most promising research discoveries for better treatments and a cure while providing impactful programs, guidance, and education to help support members of the MG Community.
Anne south Africa. My daughter was diagnosed with my genetica. When she was 6 and is in remission since 12. She is 33 years old with 2 kids. Can it came back. Thank you
I seem to make this mistake every week, when I feel good one day I do too much and pay for it the next day. Slow learner... Watching this is educating me to be smarter with energy.
We recommend joining a meeting of our Seronegative Support Group. Others with seronegative MG can provide tips and point you to providers who are seronegative friendly. Right now there are also at least two clinical trials open to people with seronegative MG. You gain access to the treatment protocol through the trial. Visit myasthenia.org for info on our support group, and clinicaltrials.gov for more info on trials. Good luck to you.
We are here to support you - please reach out if you would like to talk to someone. Call 1-833-647-8764 or find a support group online at myasthenia.org.
i only have weaknesss after i lift something very heavy. i also have nerve damage all over (sfn) no eye dropping or anything! could my weakness be just from the damaged nerves
Yes, myasthenia gravis symptoms include muscle weakness after exertion. Not everyone has droopy eyelids. Contact your primary care provider - there are some tests to confirm an MG diagnosis.
We need a Myasthenia Gravis community on here. I am now 3 and a half tears on from diagnosis and now pretty much wheelchair bound. I also use mobility scooter.
We offer a number of online support groups - hope you will consider joining one. Go to myasthenia.org. There are also several Facebook groups for people with MG that are great resources for information and support.
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Am also having seronegative mystania. sometimes am ok and sometimes realy weak sleep long hours too recover,mestinon helps jes specialy if a wont too go too gym . dropping eye diffuculties talking even thinking cost a lot of energy does are the bad days.Its realy challenge too find balance in daily life .Specialy if a have bad period of weakness a just want too sleep ,people dont untherstand that even talking is diffucult double blured vision ,weakness arms and chest .
I also have mg I hope the best we have in Florida in st Petersburg a very good Dr for myasthenia he,'s mame is Dr Weiss he has patients with myasthenia in all states
There really is only one category called MG - but there are three or four antibodies that can be involved. The most common one is the Acetylcholine Receptor (AChR) at about 80% of patients. Muscle Specific Kinease (MuSK) patients are about another 5 - 7 % and there are maybe one or two rare types I have read of LEMS and LRP4 but I don't know much about them. That leaves about 10 - 12% who have all the classic MG symptoms but have no positive antibody test - and are called seronegative. That group can face real challenges working out how to access treatment. On top pf this the AChR and MuSK antibodies can have differing modes of action, blocking, binding and modulating which adds on another layer of effects.
We'd add that people can have generalized myasthenia gravis (symptoms across the body) and ocular myasthenia gravis (symptoms only in the eyes). LEMS is actually a different disease (Lambert-Eaton Myasthenic Syndrome). Congenital myasthenia syndrome is another related neuromuscular disease that impacts individuals from childhood onward and has a genetic cause.
Jennifer, Thank you for posting your experience with MG. I was diagnosed with it in November, 2019 as I was displaying the same droopy left eye you describe. It took a team of neurologists to finally pinpoint MG as the symptoms often mimic other neurological issues. Fortunately, I am doing well at this juncture. Yes, we can go on with life. Blessings as you continue your life's pathway wherever it may lead you.
So inspiring ❤❤❤ in hospital and this video surely lifted my spirits and made me feel better and more confident in God’s grace and love and mercy ❤❤❤ty
Oh no, I thought Batoclimab is being developed for Graves Disease. Not all graves patients has TED. Currently, there is Tepezza meds already for TED. Hope there is another option for Graves or other thyroid auto immune disease.
i know i have it as my grandfather did and i looked into my promethius and yes i have the genes. im 29 amd starting to have the pain with swallowing. its so sore.
My bloods came back twice with it says I’ve got MG I’ve had MRI on my brain and spinal cord I don’t know the prognosis yet I do drop things with my right hand and my left eye lid closes on it’s own so where do I go from here please help
