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Conquer Myasthenia Gravis
United States
Приєднався 18 гру 2013
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.
Interview With MG Patient Kathryn Wotman // Part 3 of 3
Conquer MG's mission is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and to improve their lives through programs of patient services, public awareness, medical research, professional education, advocacy and patient care.
Thank you to argenx for sponsoring this video.
www.us.argenx.com
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Follow Us!
Website: www.myastheniagravis.org
Facebook: ConquerMyastheniaGravis
Instagram: ConquerMG_IL
Twitter / X: ConquerMG
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Myasthenia Gravis (MG) is an autoimmune disease, targeting the communication point between the nerve and muscle (called the “neuromuscular junction.”) In MG, antibodies block, alter, or destroy the neurotransmitter receptors on muscle tissue. Since the muscles can’t receive the signal to contract, people with myasthenia become weak. MG causes weakness in voluntary muscles that worsens with activity and improves with rest.
MG’s primary symptoms fluctuate, vary in severity and occur in many combinations. Symptoms may include droopy eyelids; double or blurred vision; weak arms, hands, neck, face or legs; and excessive fatigue. When severe, MG can result in difficulty chewing, smiling, swallowing, talking or breathing.
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Song Credit: "Optimistic and Uplifting Background Music Instumental" by AShamaluevMusic
Thank you to argenx for sponsoring this video.
www.us.argenx.com
--------
Follow Us!
Website: www.myastheniagravis.org
Facebook: ConquerMyastheniaGravis
Instagram: ConquerMG_IL
Twitter / X: ConquerMG
UA-cam: ua-cam.com/channels/Xbo3g8tJ_vFCY3QO9W1Ggg.html
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Myasthenia Gravis (MG) is an autoimmune disease, targeting the communication point between the nerve and muscle (called the “neuromuscular junction.”) In MG, antibodies block, alter, or destroy the neurotransmitter receptors on muscle tissue. Since the muscles can’t receive the signal to contract, people with myasthenia become weak. MG causes weakness in voluntary muscles that worsens with activity and improves with rest.
MG’s primary symptoms fluctuate, vary in severity and occur in many combinations. Symptoms may include droopy eyelids; double or blurred vision; weak arms, hands, neck, face or legs; and excessive fatigue. When severe, MG can result in difficulty chewing, smiling, swallowing, talking or breathing.
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Song Credit: "Optimistic and Uplifting Background Music Instumental" by AShamaluevMusic
Переглядів: 163
Відео
Interview With MG Patient Kathryn Wotman // Part 2 of 3
Переглядів 1954 місяці тому
Conquer MG's mission is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and to improve their lives through programs of patient services, public awareness, medical research, professional education, advocacy and patient care. Thank you to argenx for sponsoring this video. www.us.argenx.com Follow Us! Website: www.myastheniagravis.org Facebook: face...
Interview With MG Patient Kathryn Wotman // Part 1 of 3
Переглядів 2895 місяців тому
Conquer MG's mission is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and to improve their lives through programs of patient services, public awareness, medical research, professional education, advocacy and patient care. Thank you to argenx for sponsoring this video. www.us.argenx.com Follow Us! Website: www.myastheniagravis.org Facebook: face...
Interview With MG Patient J'Sean Nunnery // Part 3 of 3
Переглядів 1626 місяців тому
Conquer MG's mission is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and to improve their lives through programs of patient services, public awareness, medical research, professional education, advocacy and patient care. Thank you to argenx for sponsoring this video. www.us.argenx.com Follow Us! Website: www.myastheniagravis.org Facebook: face...
Interview With MG Patient J'Sean Nunnery // Part 2 of 3
Переглядів 1346 місяців тому
Conquer MG's mission is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and to improve their lives through programs of patient services, public awareness, medical research, professional education, advocacy and patient care. Thank you to argenx for sponsoring this video. www.us.argenx.com Follow Us! Website: www.myastheniagravis.org Facebook: face...
Interview With MG Patient J'Sean Nunnery // Part 1 of 3
Переглядів 2726 місяців тому
Conquer MG's mission is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and to improve their lives through programs of patient services, public awareness, medical research, professional education, advocacy and patient care. Thank you to argenx for sponsoring this video. www.us.argenx.com Follow Us! Website: www.myastheniagravis.org Facebook: face...
Emerging Therapies for Myasthenia Gravis
Переглядів 3,3 тис.Рік тому
Pritikanta Paul, MD, is an Assistant Professor in the Department of Neurology and Rehabilitation at University of Illinois at Chicago, and a neurologist with UI Health. Here Dr. Paul reviews new therapies that have been and are being developed to treat the autoimmune disease myasthenia gravis. He explains terms like “complement inhibitor” and “Fc receptor inhibitor” and addresses treatment opti...
Introducing "Myasthenia Gravis: Finding Strength One Day at a Time" - Snippets
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Introducing an MG interview series! Individuals wrestling with MG describe challenges they face. See the full interviews with Alicia Angel, Aimee Zehner, and Aleece Maree on the video channel for Conquer Myasthenia Gravis.
Myasthenia Gravis: Finding Strength One Day at a Time with Aleece Maree
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#4 in a Series - with Aleece Maree, an aesthetician in California. Sarah Bolton (Resilience Coach & Rare Disease Advocate @boltysbazaar) asks individuals who have myasthenia how they cope with symptoms and keep their lives on track. Aleece was diagnosed with MG as a teen. Over time she has learned the importance of communicating her needs, developing a healthier relationship with food, calming ...
Myasthenia Gravis: Finding Strength One Day at a Time with Alicia Angel
Переглядів 533Рік тому
#3 in a Series - with Alicia Angel, New York City based singer/songwriter/artist. Sarah Bolton (Resilience Coach & Rare Disease Advocate @boltysbazaar) asks individuals who have myasthenia how they cope with symptoms and keep their lives on track. Alicia has had to put aside an active travel schedule for work and fun. Instead, she has overcome her initial resistance and found effective ways to ...
Myasthenia Gravis: Finding Strength One Day at a Time with Aimee Zehner
Переглядів 804Рік тому
#2 in a Series - with Aimee Zehner, CEO/founder of EveryBody Empowered. Sarah Bolton (Resilience Coach & Rare Disease Advocate @boltysbazaar) asks individuals who have myasthenia how they cope with symptoms and keep their lives on track. Aimee discusses her 7-year journey to get diagnosed with a rare version of MG, and explains how she uses gratitude to stay positive through health challenges.
Conquer MG celebrates 50 years the MG Community
Переглядів 2892 роки тому
We've come a long way with serving the MG community. With gratitude to volunteer SeAndrea Ferguson for creating this celebration video.
Myasthenia Gravis: Finding Strength One Day at a Time with Garry Morehouse
Переглядів 2 тис.2 роки тому
#1 in a Series - with Garry Morehouse. In this interview series, Sarah Bolton asks individuals who have myasthenia how they cope with symptoms and keep their lives on track. Garry tells how he slowly, gradually added exercise back to his routine after myasthenia left him too weak to do minor tasks.
Tell Me About Autoimmunity
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Ryan Jacobson, MD, Asst. Professor in the Department of Neurological Sciences at Chicago's Rush Medical College/Rush University Medical Center explains how the immune system works and goes astray - including at the neuromuscular junction in the case of myasthenia gravis. He discusses the role of the thymus, and how MG medications impact the immune system.
Myasthenia Gravis Subtypes
Переглядів 4,8 тис.2 роки тому
David P. Randall, DO, Director of Neuromuscular Neurology/ Advocate Medical Group, explains how myasthenia gravis is classified by antibodies, age, presence of a thymoma, and other features. This, in turn, defines most effective treatment choices.
Eating to Fine-tune Your Immune System - with Conquer MG
Переглядів 3,4 тис.2 роки тому
Eating to Fine-tune Your Immune System - with Conquer MG
MG Navigating the Disability Benefits Maze
Переглядів 9833 роки тому
MG Navigating the Disability Benefits Maze
Myasthenia Gravis: Eating to Combat Prednisone Weight Gain
Переглядів 16 тис.3 роки тому
Myasthenia Gravis: Eating to Combat Prednisone Weight Gain
Meditative Breathing for Those with Myasthenia Gravis
Переглядів 2 тис.3 роки тому
Meditative Breathing for Those with Myasthenia Gravis
Wellness Now with Myasthenia: JRowin, MD & MZepeda, NBC-HwC
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Wellness Now with Myasthenia: JRowin, MD & MZepeda, NBC-HwC
Clinical Trials Q&A: What Patient, Doctor & Pharma Do
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Clinical Trials Q&A: What Patient, Doctor & Pharma Do
Clinical Trials: What MG patients need to know - Rabia Malik, MD
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Clinical Trials: What MG patients need to know - Rabia Malik, MD
Clinical Trials Update: Ra Pharma, Momenta & argenx
Переглядів 8514 роки тому
Clinical Trials Update: Ra Pharma, Momenta & argenx
Ryan Jacobson, MD: IVIg, PLEX & New Therapies
Переглядів 1,8 тис.4 роки тому
Ryan Jacobson, MD: IVIg, PLEX & New Therapies
What’s the best antibiotic for sinus infections? I was prescribed Amoxicillin-clcv thanks
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.
Thank you for sharing this great video!
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
Thank you so much..I will do it immediately
@@cyrusjulian187 ..kindly share your email address.thank you and 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!
@@nushratkarmali7526 how have you been managing it?the only thing my wife can take is a prescription called mestinone 60mg
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.
Carnivore diet is the ultimate solution and the way we should be eating!
Can you tell me his name x
That man’s a great ambassador for M G.
Can you get a mobility bed 😊
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.
I was first diagnosed with Myasthenia gravis (MG) in december 2021
I kicked mg thru diet, exercise, yoga, meditation. cold showers, and working thru past trauma.
Please tell me more! I want to go into remission
@@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.💕
@@lisacoto6968 When you meditate, have complete & total faith.
Please help me I don't have money to buy my mg medicine 😢
Thank you very helpfull. I am going for the test soon.
This's much helpful information. I saw a neurologist 3 days ago, he denied MG can cause cognitive issues.
Hi I am MG patient my problem last 6 months
No Johnsons and Johnson...
Indeed and thank you guys for this information. I suffer from MG ❤
Thanks
They thought i had a stroke then months later they thought i took a heart attack ... i didnt have either . I have MG and this video helped x
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.
Hi. I was Diagnosed 3 years ago with myasthenia. I'd love to share my struggles with this journey.. thanks 🙏
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.
It's hard to exercise when your muscles aren't getting the message...
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?)
How do you work
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.
GOD BLESS YOU !
❤❤❤ I live with MG and I exercise daily with calisthenics within my own limits.. thank you for this information
Thanks for the information. Im living with MG and I exercise calisthenics.
I have MG. And I exercise calisthenics ❤❤❤
Carnivore put mine in remission, we need to lover inflammation, insulin.. All the best to everyone 😊
Keto diet is the way out! ❤ we.need to lover inflammation, insulin, ect
I am MG patient my problem 10 years
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 am MG patient my problem 10 years
I am MG patient my problem 10 years
I am MG patient my problem 10 years
Is there a cure?
Calisthenics ❤
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.
I am MG patient my problem 10 years
I have a friend that got a late diagnosis unfortunately he only lived for a few years after discovering. Prayers for everyone dealing with this.
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
Thank You, I got a lot out of this.
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.
I recommend strongly ask your Dr for a Thymomectomy even no CA.
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.
Mg patient
Just back from another trip to the er. I had whole body spasms, weakness etc and the drs where confused as to why the blood tests where always normal... umm that's literally a sign of this illness.
YOU, are the man!!!! The best explanation/description of my eye issues ever! Thank you!