I was 72 years old when I was diagnosed in 2016, after having symptoms for about 5 years. Ocular was actually my last symptom. Fatigue, weakness of legs and arms, difficulty chewing and swallowing, drooling with my mouth closed, dropping things, and finally breathing difficulty and double vision. My husband suddenly died and everything exasperated. I was hardly able to function and serious testing began. I could not hold my head up and doctors thought it was PTSD. This went on from May until November when a Neurologist did a blood test and confirmed that I had MG. IVIG was my first treatment and my symptoms clearly improved. I went once a month for 7 months. Each treatment was 3 hours a day for 5 days. At the same time, my doctor put me on Imuran. After the 7 months, the Imuran kicked in and I have not needed IVIG. I also take Mestinon. There are still days I feel weak and need rest. But I can take care of myself. I drive. I use a walker. I use a wheelchair if we go someplace where we will do a lot of walking. Stairs are a killer, but I take my time and use a lot of energy. I just turned 80 and I have plans to travel next month with my son. Learning about Myasthenia Gravis, while in deep grief was challenging. I had to learn to become an entirely new person.

Bless you and thank you for sharing. I have been diagnosed late in life, and tended to attribute my symptoms to getting older. Living with MG is a learning curve. I resonated with your experiences. I am still on the path to figure out which medication works best for me. I have a fabulous neurologist who specializes in MG, but she is over 3 hours away - well worth the drive. Wishing you all the best!

Thank you Holly! I got diagnosed just 6 weeks ago and have had two crisis that ER thankfully got under control just by IVIG and steroids and kept me in ICU. Being able to relate to stories of real people going through this is warm. Thank you for sharing your story.

thank you Dr osuma for your cure remedy against my fibrosis disease ...herbs are the best

I view this brave lady's post after 6 years. She is right. Learn all you can about this aliment. As a male aged 73 I caught it 3 months ago as an Australian living in Vietnam. Luckily, I got back to Australia just in time just as I was having difficulty breathing. Few doctors know about this, but luckily I got diagnosed almost immediately because I am 'pushy'. The steriod treatment is hard to handle; however, it is a must because the IV treatment only lasts 3-4 week. Every case is different. Learn what yours is. This is an insidious ailment and 'ambushes' you with muscle weakness when you don't expect it. Be strong. Learn how to manage the MG. Don't try to fight against it. No matter what the hardships and limitations the MG imposes, be happy if you manage it well, it is not fatal, as are so many other neurological diseases. Cheers my fellow suffers. BE STRONG. NEVER GIVE UP. WILL TO WIN.

Mam i need your help.my daughter also affected this deadly disease.now it has any cure for this.pleasr help me

Hi. My dad passed away due to IPF this October. We bought a Philips simply go mini and a Philips concentrator for 2.4 lacs inr and 1.6 lacs inr. Dad didn’t survive. I hope your patients do. If they can help with these two devices let me know. We don’t intend to make any profit out of these. Just hit me up. Maybe the machines can be used by you?

Thank you for your KZbin Billy. You are truly an inspiration and a positive person. I had J pouch surgery more than 30 years ago. I have had problems with pouchitis and life isn't always easy but is definitely worth it. I am retired but choose to still work some days. I see my grandchildren often and love to do activities with them. I used to travel sometimes and lately that's more difficult due to my dependency on nearby restrooms, but I still hope to travel in the future. I visit the bathroom between 8 and 25 times per day depending on whether I'm going through a rough patch or not. I often get up to visit the restroom multiple times during the night, so need to be extra kind to myself and to rest when I need to during the day. I'm alive and enjoying life and I'm so thankful for that. I am presently on biologics although not sure whether it's making much difference. I've tried Visbiome and it does seem to alleviate some of the pouchitis issues for me. I also have had problems with ligaments and didn't realize that it was related to my Crohns. This life is not for the faint of heart, but everyone carries some kind of burden and I'm used to mine now. Most of the time I do not let it prevent me from doing things I want to do. There are sometimes adjustments to be made, and I'm still searching, still learning better ways to cope with the diet, food, nutrition, output issues. The main thing is to be like you, Billy, try to remain positive, keep looking ahead and if you get stuck in a quagmire of depression and disease, do seek help. Sometimes, when things aren't great, I make myself count my blessings. I spend extra time in nature, or with people who uplift me. This helps me. I'm not going to live forever, but I do want to live my best life and do things to help others. I cannot choose my health or circumstances but I can choose how I live with them.

Thank you so much Doctor for useful video. I am a IPF patient since October 2018.

So where are we in 2023???

My brother died of it in past.very cruel genetic disorder

I was diagnosed MG even though no antibodies and interested in working with a functional doctor that you could recommend to get specific dx and coach for carnivores or keto diet. How can I get in touch?

Robert I have sc as well. I was 17 when I found out. It was à month b4 my 18th birthday and pain hit me bad. I got admitted 3 days b4 and early morning I had my gall bladder removed and 31 gall stones.

Mine started as Ocular MG and then went to gMG about 6-months after that. I truly believe it was brought on by a specific high blood pressure med I was on...as soon as I stopped it, it was an almost instantaneous change. I'm back to semi-normal. Not perfect, but a 60mg Pyridostimine (Mestinon) cut in half (to make 2 doses) usually is enough for me to keep it at bay on any given day...

It makes me want to blow my brains out

My medicaid would not approve my IVIG through outpatient.. only if I use the ER and I'm admitted. You are so right about the advocate in the family. Idk what I'll do when my mother passed away because she is the only advocate that I have ...

May your prayer go answered.

Thank you Holly for sharing your story. I was diagnosed in 2019 with Ocular MG that has fortunately responded well to Mestanon. I do experience lingering fatigue, especially in my legs when I walk too far. I am learning to live with my limits, and am no longer apologetic to friends or family when I have to rest. My latest visit to my neurologist was good, and she's pleased with how I'm doing. Listening to your video gave me great encouragement as though we were in person- thank you dear lady!!

I recall the days when. Usa and some others wanted tried the wrong journey for us

Sending much prayers to you all.

More about AMN, my brother recently diognos with AMN

You are an amazing guy and I salute your honesty - bless you forever!

God Bless and get you well I fully understand your experience- as MG also struck me down It is like no other disease and unless you suffer from it - no one will ever understand it. I use the analogy- what if you were confined to a wheel chair - but could walk around normal following medication What would that do to your mind - and to those around you MG is like this My closest ones - seeing me as normal - but never allowing for the massive debilitating effect of the disease Take care

Thank you for your story. I am just now getting a diagnosis after years of symptoms

Does anyone else feel as though there is such an emotional component to MG. I feel so weak emotionally somedays, I can’t get a sentence out without tears. I was kind of bada$$ if you will and now I feel like an baby. I eat, sleep and cry it is so overwhelming. I hope to be on the other side soon, been getting Vyvgart (6) treatments this year

This was two years ago. Where do things stand now?

This is such a great video. I’m awaiting my jpouch surgery, but just hearing you say you want to be a supporter for others is amazing! I’m currently designing a brochure for people who wake up from emergency stoma surgery. It’s great to know there are others wanting to help people!

Good advice on self advocating for oneself

I start my IVIG in a few days and this made me much more hopeful for it to work

Thank you so much for sharing. I experienced my very first symptoms 2 months ago. Everything happened so fast. Within weeks, I couldn't see with double vision then chewing, swallowing, and now breathing. I did IVIG a month ago. And now I'm currently going through plasmapheresis treatments. My last neurologist was just a general neurologist versus the current neurologist specializes in Myasthenia Gravis. I think I'm in good hands, hopefully we will find a way to get my symptoms under control soon!

Well I have this. I am not going to go to the medication route. No way. Pharmaceuticals and I don't get along I have snp gene mutations. Any synthetic is a bad recipe for me. No. My immune system's already dysfunctional. I've been in and out general and dystopia. Today it's affecting my mouth in my eye. My whole body is just weak. The pain in my center the chest is getting very noticeable. I've noticed that the thymectomy works for some and doesn't for others. So I read a study about the dysfunction of the thyroid. Overactive underactive immune system. Found an animal study. Without saying the pincushions given to try and trigger immunity overworked thymus gland. Which caused a dysfunction. Overworking it. Disrupting the T cell production. Annihilating the immune system. And issues with myasthenia gravis. If that isn't my life I don't know what is. Every single one of those pins I got my arm. Every year it would get worse and worse and worse I'd miss more school. More school more school. Years ago my diaphragm went crazy on me. Couldn't breathe. Definitely had fatigue and weakness. My leg wouldn't work. Then my eye. My eye is only giving me dystopia. Seeing double vision. Did the test. Have it. Both of them. within these years that I have been in and out in and out. I think I know what to do. I'm excited. Working with Dr tenpenny's office. Cuz this is an adventure. Got to put this puzzle piece back together. I'm going to do a nutritionally. I hope. Cuz if not I'll just sleep and sleep and sleep. And have a good day and sleep and sleep and sleep. God I hope not.. there's so much I want to do.

Thank you for this!

I’ve experienced all u are saying

I know the feeling I been on steroids 60mg since January an still on them an I’m takin antibiotics 3 days weekly an mestinon had surgery an did 2 5 day IVIg an Plasmapheresis still go into crisis’ now I’ll be doin a form chemo this month

I began having eye problems around age 40yo. I was diagnosed with dry eyes. Finally recently gave me Restasis that helps but obviously I still need 3 pairs of eye glasses to. see close, distant and sun glasses. I have been fatigued since bone reconstruction surgeries in the military 80s-90s.

Sounds great. You do Have to register and add your phone number 😞 hugs to all fighting this. Most stories I find the comments are off. Thanks for sharing. I hope your doing well

I tell myself all the time, it could be worse. I've known people with ALS and MS which is devastating. But living with MG is no picnic. Thanks Holly for sharing your story.

My mom battled with Idiopathic pulmonary fibrosis for years but I am glad right now that her condition swiftly changed positively as my mom can now breathe normal as every other person after undergoing Idiopathic Pulmonary Fibrosis herbal remedies from Dr.Schneider Lon on KZbin..,

My mom battled with Idiopathic pulmonary fibrosis for years but I am glad right now that her condition swiftly changed positively as my mom can now breathe normal as every other person after undergoing Idiopathic Pulmonary Fibrosis herbal remedies from Dr.Schneider Lon on KZbin.

My mom battled with Idiopathic pulmonary fibrosis for years but I am glad right now that her condition swiftly changed positively as my mom can now breathe normal as every other person after undergoing Idiopathic Pulmonary Fibrosis herbal remedies from Dr.Schneider Lon on KZbin.

My husband battled with Idiopathic pulmonary fibrosis for years but I am glad right now that his condition swiftly changed positively as my husband can now breathe normal as every other person after undergoing Idiopathic Pulmonary Fibrosis herbal remedies from ( Dr.Schneider Lon on youtube

I Known myself to be a fighter ever since I got diagnosed with Myasthenia gravis, having symptoms reoccurrence of muscle or arms and legs weakness, impaired voice, double vision, difficulty swallowing, fatigue, shortness of breath and drooping of upper eyelid. I was pain everyday, My greatest Joy is that today I don't experience any of this symptoms anymore and I am completely cured of Myasthenia gravis after using a herbal medicine from Dr Madida on KZbin.

I've been diagnosed with Fibromyalgia but I'm wondering if I have this instead, or this in addition to Fibro...I've tried to describe it to people as I feel like my muscles are wasting away.

you need to adjust the content

I know that one doubts herbal medication even Dr Ehimare, so is everyone i believe but right now i can boldly say i don’t doubt anymore especially herbal medicine treatment from DR EHIMARE from doctor Ehimare on KZbin which cured my idiopathic pulmonary fibrosis

All thanks to Dr Madida on KZbin for accepting to help me the first place, he indeed cured me of my IPF(Idiopathic pulmonary fibrosis) with his herbal medicine.

Thank you Holly..I do have my share for almost 4 years now..ptosis,double vision... fatigue..are all in..mestinon 3x per day as prescribed..when eye dropped .. bitter taste of steroids came to rescue .. yack.. worst thing with this are moon face and buffalo hump.. I'm used tó diplopia..I'm 63 now.. losing weight..I wonder if it's part of the disorder...hoping to hear more treatment and progress..I also got vitiligo...auto immune disorder too...stay positive guys we can skip this..from Philippines God bless us

Be your own advocate. I deal with insurance and send nurses to do infusions, please seek copay assistance programs

Thank you for the information, I just recently was diagnosed with it. It’s really scary to learn about the effects of the meditation the doctor prescribed.

I want to thank Dr Ediale herbal home for the help he rendered to me by getting Rid of idiopathic pumanary fibroids,(IPF) i was Diagnosed in June 2021,Dr ediale on KZbin channel cured me finally