Curious about myasthenia gravis? Conquer Myasthenia Gravis (formerly the Myasthenia Gravis Foundation of Illinois) shares information about this rare autoimmune disease, symptoms, treatments and ways to cope. Speakers are noted MG researchers, clinicians and experts in related fields. For more information about MG, visit www.myastheniagravis.org or contact us at info@myastheniagravis.org.
My sister was diagnosed with mg about 3 weeks ago shes on medication she is only 7 years old and has apparently had it since birth. People like to tease her bc she does have a disability but when she isnt tired or anything she just looks normal so people sometimes thinks shes faking it. She has a rlly hard time talking like she talks like a toddler would nobody can understand her except her family. She is a very sweet little girl though shes always looking after people standing up for them and shes so innocent.
I have had general MG for 3 months as a 73 year old male. Gary gives me hope. I was on 50mg of steroids per day. Now I'm down to 30mg per day, and due to reduce 5mg every 14 days, plus mestinon (60mg 3 x a day), and Cellcept 500mg 3 x a day.. I am up and down like a yo yo even in the same day. But I am better than I was. Sometimes I despair. But if I do, I seek these inspirational videos and avoid all forms of STRESS. BTW, I find that exercise can hurt in that the collapse of he muscles after exercise can last for days. So exercise, but as Gary says, LISTEN to your body. Cheers.
I have had general MG for about 3 months. It hit me hard as a 73 year old male in Western Australia. It may be a short time, but I am a researcher. I have compressed time by understanding the theory of the ailment and how it applies to me. I have all the symptoms of the usual general MG sufferer. I found for me (I say 'for me' because, as sufferers know, this is a very individualistic disease), there are 3 main triggers for the heightening of either the good or bad symptoms: 1. Lack of sleep, probably because I was on 50mg of steriods for the first month. I am slowly decreasing, but sill remain on 30mg per day at present. Every fortnight I drop 5mg and transit to Cellcept. 2. STRESS. This is a major negative trigger. It always makes my symptoms much worse. 3. Love and support of understanding family and friends. This is a major antidote for bad symptoms. It is harder to find this because so few (including doctors, and even neurologists, understand this rare, mysterious and highly variable ailment. The individual tactics provided in this video to reduce strength are well worth adopting. All the best to my fellow sufferers. The more we support each other and educate those around us, the better. Cheers.
My wife was diagnosed with myasthenia gravis in 2018 at 36 years old.i had never heard about this disease before .we live in rural kenya and maintaining the illness has been hectic for us .I'd love to connect with someone in this group to advise/help us.thanks
I was just recently diagnosed as well. There’s two tips I can share right now. 1) Look up Dr Berg Vitamin D or Dr Berg Myasthenia Gravis as he has a great video on this. It’s called Coimbra protocol. 2) there’s a book called Metabolic approach to cancer. I pray this is not ur family’s condition but there is a form of cancer called thymoma which is a big reason for a lot of myasthenia gravis. God bless you
Hi, was diagnosed in 2012, went into remission for about 8 years and have had a relapse presently but am confident will get out of it soon. Had a thymectomy also - luckily not csncerous. Its manageable and most important - be happy not stressed… extreme stress, fear, just unplugs the whole thing! I live in Nairobi. Looking forward to watching the video mentioned above. Cheers!
I'm convinced this is one of many diseases caused by vegetable consumption and can be cured by eating meat only. Hopefully people with MG give it a try and check for themselves the power of eating meat alone.
I’m just now finding this video. Thank you. I’m 56 seronegative generalized. It took 6 years for my diagnosis. My symptoms are bad and only getting worse. My respiratory tract has become very weak. It’s affecting my voice, very visible labored breathing most of the time. I had my thymus removed almost 1 1/2 years ago. I’ve gotten considerably worse. I’m not sure I’ll live long enough to see the three year improvement mark. Prednisone, Mestinon aren’t helping me anymore. Ivig was terrible for me. I am on Imuran. My Neuro is looking at a different med right now. I don’t know what to do next. Can you recommend anything? I’m not wanting to give up but I may not have a choice anymore. Thank you.
@@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.💕
J’Sean, thank you for talking about your experience. I was diagnosed 11 years ago and still pick up new information when listening to others in my support group. From you, I’m thinking maybe I should add a neuro opthamologist (sp?) instead of the regular one I now have. Thank you for that and good luck on your journey to feeling better.
I was diagnosed in 2013. I find the rarity of MG can be quite isolating. Wishing you and all the other MG warriors good luck and energy, this isn't the easiest disease to navigate but we keep it moving. Literally 😅
@@giadoyle553 indeed.. and thanks 🙏.. I have a tone of research on foods and supplements that help fight MG.. I hope I can be able to be a beacon of light.
I was recently diagnosed about 5 months ago and was hospitalize for a week. I test positive for MG and my medication took quickly. I nearly died from Covid 19 the year before.....but God pulled me out of that and now God is healing me on MG......( I am 57 )
This mirrors my situation. You say you had it 5 months ago, but your post is dated 6 months ago. You must have had it a little earlier. I also had serious Covid the year before. My medication of 50mg of Predsidone and 3 x 60mg of Mestinon, and 2 x Cellcept is just about keeping me even. I am now starting to reduce Predsidone and having withdrawal symptoms. Not fun. I am a 73 yeaqr old male. My heart goes out to the young girl who posted this video. At least I can not hold my head up and keep my eyes open! Cheers from Western Australia. (How are you doing these days?)
I'd actually prefer a more clinical portrait of Ms. Lekovic. Eager to look at my interest in natural nutrition through my new autoimmune diagnosis. So much prednisone, among other meds. Thank you.
So glad to hear about your experience, Garry, and that you are working hard to keep the exercise going... I like the IvIg treatment got you off the Mestinon! I'm wondering where you live, Garry, and who your doctors are/were. I'm not having much progress after 30+ years of dealing with this thing, and now I have other neuro things as well, so I'm feeling even more urgent.
I've done these a few times now and they have helped me throughout the day but with MG I feel like I have to do everything in slow motion and they were so fast but very helpful all the same.
Thank you. I was diagnosed with MG a year ago. My doctor asked me to excercise but it was hard on me and I was scared cuz I tried it before diagnosis and almost fell over from the machines. I'll try those today
i started to get the ocular eye lid droop in the first group staff luncheon we had at work since the pandemic began. nov 2 2021. i had been having random double vision for at least a month before. so every coworker in the room saw. an eye dr in same building saw me on the Friday of that week. didnt like what he saw. did the ice test called in a favor at the med center and got a neuro opthomologist to take me at 4pm, on a Friday, mind you as a favor. She re did the ice test. sent me thru the ER for the bloodwork. put me on starter ramp up dose of mestinon. i was so lucky in that, my symptoms were recognized early and correctly diagnosed. it has still be an extremely hard struggle. i ramped up to generalized within months im still learning to live with this and find the right combination of whats available to keep me from flaring or going into crisis life is real different now.
Why are we researched and not cured ,to many negative treatments .just saying.🤔😳 . We seem to be treated for side effects that are worse than the condition , not trying to be negative but why is the side effect always low white blood cells ,this is not good ,is it.🤔 More medicines on pharmacy shelves ,=treatment , no medicine off shelves = not cured.
