Life with Myasthenia Gravis

[@jcnieves2992]

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 )

[@starcorpvncj]

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?)

[@mariocavazos7481]

I was first diagnosed with MG in March 2021. I began having symptoms (occasional blurred vision, some vertigo, etc.) a few years before but attributed it to getting old. (I am 69). I finally saw a doctor when my eyelids began drooping uncontrollably and I had trouble holding my head up without supporting it with my hands especially while sitting at a computer. I am now on a regimen of Pyridostigmine Bromide and it has really changed things dramatically for me. Drooping eyelids, blurred vision, vertigo, dizziness, shortness of breath, fatigue, walking difficulty, unable to hold head up etc. are all now managed, a real, life changer. I can now keep up with the grandkids and get back to enjoying all those things I thought I would not be able to do again.

[@starcorpvncj]

You are one of the lucky ones who didn't have to go to steriods. They really knock you around. B ut Pyridosgtigmine was nowhere near enough to combat my MG.

[@alkavaswani2120]

@@starcorpvncjby

[@lauradavenport8199]

Thank you so much for sharing your story. You are so sweet and I love your advice to slow down and value everything. I’ve been struggling with an undiagnosed autoimmune for a year and a half. It’s completely taken my life away. Many days I just lay in bed trying to rationalize why I shouldn’t kill myself. Thank you for reminding me to be grateful for what I have. Two loving children and a God who loves me.

[@StarShootex]

Same. I'm only 8 months in and I'm at the end of the line... How do you know it's autoimmune?

[@ritatoews605]

I hope you found some hope for yourself and strategies for managing. ❤

[@MGLifeHacks]

I was recently diagnosed and just got out of the hospital Monday, and this message of taking those moments to slow down and value everything you do have, brought happy tears. Much needed, and agreed. Thank you for sharing this.

[@crystalr9633]

can you please tell me how were you diagnosed? what test showed you have it...I'm so scared I had test done and waiting for results my dr mentioned als or myasthenia gravis... what are your symptoms?

[@AubreyShelton-rr7yy]

​@@crystalr9633they have to send the test off and they just have to know.i gave so MANY ER doctor's notes w every single EVERY SINGLE symptom..blurred vision.. could not talk couldn't hardly walk.. falling down constantly..the double vision should ja e been the giveaway though..I was falling down everywhere hitting my head ..I couldn't spit when brushing my teeth..I could barely use my hands on most days..it was hell..it took 2 yrs to get a diagnosis... and I lost idk..about 45 55 #s in 6 months.ans I have. Zero energy.im 46...I was diagnosed when I was 38 I believe..it's been. Hell..I still don't have any income and was just dropped from snap

[@mikebarker2806]

Dear Heather, I, too, have MG that started with Ocular MG and has progressed into generalized MG. So far, the medication I'm on is working well, but the main weakness is now in the thighs of my legs. I will be walking just fine and suddenly have to slow to a crawl where I can't out run a turtle. Thank you so much for sharing your situation with this unwelcome "Invader" neither of us wanted. You inspire me and no doubt many others of us who battle MG.

[@jahthehusky9745]

Same here. When I was first diagnosed and had troubles with my eyes, I was devastated but later I found out that resting and avoiding any stress can make me feel better. So from feeling devastated, it then made me feel somehow blessed because MG became my forced-push button coz I always have to remind my self to slow down and have rests in between. I no longer tire my self and I now appreciate the little things in life.

[@AubreyShelton-rr7yy]

How do u work?

[@laylam4241]

This is such a beautiful message! Hearts

[@kevinnicks8194]

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.

[@brittneymcknight3166]

Im at a loss for words. ur energy is so powerful and i thank you for sharing.

[@veravero5715]

Thank you so much for the video. Stay well.

[@maryimerendevela6685]

Thank you for sharing! I didn't know a neck brace would help. I will use one when I can't hold my head up. Much love ❤️

[@JustAGrrrrl]

Thank you, Heather. Well said♡

[@an.anonymous.writer9796]

GOD BLESS YOU !

[@kbutcher357]

I was diagnosed with MG and Graves disease, I was prescribed azathioprine and it's helped, as my symptoms were quite prominent (sagging face, eyelids etc). Slowing down is good too.

[@brandilowe1916]

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.

[@Charlotte-gb6nt]

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.

[@beckylane5109]

Thank you!! I am a student nurse studying this disease and I have to do a presentation on it. I will be using your awesome video in my presentation :)

[@joonaid]

I am also a MG survivor from India. Plz bring some thing that can change the life of MG patients. Thank you.

[@beckylane5109]

@@joonaid well as a floor nurse i am limited in what i can do but any MG patients that i come across in the future of my career i will give the best care and support i possibly can :)

[@garychristian1960]

I am an 86 yr old male. Diagnosed with MG in 2003. I lost a lot of weight because I could not swallow. So difficult. Water same problem. I had the weakness of muscles and a little vision problem. My doctor and I discussed my treatment. I said I would really not want to be on prednisone. I did 12 immune gobulin which did not work. Doctor then prescribed Immuran (an immune suppressant but warned my it might take 8 months or so to help me. He was right on the time and it has helped me to this day and I have never been on prednisone. I used a patch my left eye while at home computer or watching tv. My left side was always weaker from MG. I have been so blessed that my doctor was willing to try something different. He asked me several times if I was on prednisone when in his office and testing my skills. He was that impressed how well I was doing. Did I mention I can eat anything. But cautiously sometimes. hugs and bless Heather. Everyone with this disease is different.

[@mariadaisyosman8997]

thank you for sharing am recently diagnosed with MG and I needed to know more about this condition.

[@erinnorwood6124]

Thanks for sharing.

[@leomac6373]

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

[@vanillagorilla7898]

Thanks for sharing, I am 1.5 years post thymus removal. I got to a point where prednisone was so high my blood levels were out of control. Keep strong and push sister!

[@Jewalify]

I'm 14 and I had that operation 1 year ago too

[@Robzabest25]

love the ending

[@GamingVideoCreator]

I was first diagnosed with Myasthenia gravis (MG) in december 2021

[@robertrumph6646]

good video!

[@Nursefire]

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.

[@shayladawkins6133]

Mg warriors!!!!

[@SkyeCafe]

thank you for making this video (':

[@hopelee9724]

Is it possible to get mg with9ut the face or eye weakness. I has limb girdle weakness

[@farahcooreman6748]

I have it to and ty for the tips

[@ElizabethHurtado-py8ur]

#keephope

[@AubreyShelton-rr7yy]

How do you work

[@alisalih8935]

You a courage girl

[@shalonv7093]

❤️❤️❤️❤️❤️❤️

[@KJWalda]

Wow.. I have MG also but my symptoms are more mild. Mostly my eyes. Hope you're doing well!

[@Tiffanysopretty88]

My teenager is only 14 and he has the symptoms and the blood came back positive I’m so nervous he said he feels fine only his eye is drooping I’m so upset 😢

[@ElizabethHurtado-py8ur]

#myastheniagravis#gravesdisease