Myasthenia Gravis and Exercise

[@donlynarbuthnot6878]

LOL - I'm very happy to see my Snowflake Warrior art work in your presentation. MG has changed my life forever. I use to be an International Folk Dancer, dancing 40 hours a week. Now I'm fully disabled due to years of having MG without a diagnosis. What has helped me most to exercise is when I'm on a stationary bike, I peddle for two minutes, rest for 30 seconds, then peddle for 2 minutes, rest... and so on. It's frustrating to not be able to exercise in the ways that I use to, but I'm grateful for what I can do.

[@joanwincentsen3246]

Donlyn, I'm delighted to learn that you are the original artist of this piece. It's one of my favorite MG graphics because it's positive, whimsical and informative. Could I include it along with your explanation (above) in the Conquer MG September newsletter? (or some other content, if you'd prefer)

[@NotAnotherKuromi]

This was good advice for loads of conditions, I wish more physios didn't push their patient too hard, I have had bad experiences.

[@nutbreaker22]

I was in bad condition, but first, I went to thymectomy surgery, and about 3 years after that, I started to exercise in gym.. oh, well, now I'm in better shape that most of my friends, who don't have this decease. I'm soooo happy! I've learned through the years that my muscles are in sleep when I don't use them. When you wake up your body, week by week, you're no longer weak!

[@SukieNain]

😅 2:53

[@SukieNain]

😢

[@mgawpa3036]

Thank you for sharing this! - Michelle

[@uknowilove]

Thanks for the vid, it helps me figuring out ways to exercise 😊

[@MGLifeHacks]

Thank you!

[@punniyabalagalla4595]

Thank you. Very helpfull. 💐

[@tomg5934]

Is there any conversation concerning possible genetic therapy for a cure, i.e. CRISPR or some other genetic editing methods?

[@mattflumerfelt]

I kicked mg thru diet, exercise, yoga, meditation. cold showers, and working thru past trauma.

[@lisacoto6968]

Please tell me more! I want to go into remission

[@mattflumerfelt]

@@lisacoto6968 I take at least one cold shower/ice bath a day, I eat a mostly vegetarian diet, i exercise/do yoga/walk every day when possible, i have done inner emotional work/developed stronger boundaries, eliminated toxic people from my life, and stopped giving to situations that give nothing in return. Act as though you're in training for a marathon. We must replace illness with fitness.💕

[@mattflumerfelt]

@@lisacoto6968 When you meditate, have complete & total faith.

[@user-xf3il8xx3i]

My wife is currently undiagnosed. She has been diagnosed with “undifferentiated connective tissue” but we think it is MG. She can’t hold a smile without one side drooping, has difficulty chewing, swallowing, talking, etc. She has muscle weakness all over, which seems to be exacerbated by heat. She just had two blood work tests for MG but they came back as negative, but we know that some people have MG without testing positive for the two tests. Where can we go from here? She has had to give up working, ballet, going back to college for a second bachelors.

[@MyastheniagravisOrgIllinois]

Jason, it sounds like your wife has already seen many doctors. The only thing I might add is this: has she seen someone who has seen a lot of MG patients? Depending on where you live, you could try someone on Conquer MG's Medical Advisory Board, or on MGFA's Scientific Advisory Board.

[@SparkingLife111]

Look up huperzine-A, for mg. Its a vitamin. See if it helps some mg like it better than mestinon.

[@SparkingLife111]

Also look on your health insurance plan for a movement disorder specialist

[@muanpuiiabawihikhiangte]

I'm Myasthenia Gravis patient😔