Holly's story: My experience with MG treatments

I teared, when you said you was able to wash dishes standing up. I truly understand you!! Thank you for sharing your story.

I have had all the symptoms,like Holly was living life 7 min at a time , went through diagnosis hell for 5yrs. Finally, this old nurse was indulged and given Mestinon which took my single breath count from 15 to 44, let me walk without pain, sit straight up, breathe better at night but will still need bipap and oxygen.I no longer feel like I will die very soon. Still can't decide what is worse all the symptoms of MG or the way neurology and pulmonology acted towards me.

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.

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!

Holly - thanks so much for sharing your experience. I was diagnosed in October 2021. My lupus doctor arranged for me to have testing done through the neurology clinic at that time; but because of the Covid situation, I am not able to get in to see a neurologist who specializes in MG until April 4th of 2022. Your down-to-earth description of your everyday experiences has helped me so much! Thanks for taking the time to do this. (For instance, I really related to not being able to stand long enough to wash the dishes. For some reason the things I can't do in the kitchen have bothered me the most - I can't stand long enough to prepare a meal - and sometimes I can't stand long enough to fix even one thing. The description of how you changed your hairstyle was helpful too - it actually made me laugh. Your description of your excitement about being able to stand long enough to wash dishes made me cry though - but they were hopeful tears of happiness for all of us experiencing this disease. I am happy to know that I will be able to stand to wash dishes again - really and truly! Thanks again for informing me and making my heart lighter!

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!!

Thank you for sharing. 💜 I am trying to find other people with Myasthenia Gravis since it is so rare and most people do not understand how much it affects our lives. Finding a neurologist has been very difficult as there are not many where I live. It wasn't until I was airlifted from our local hospital to a specialized hospital that I finally saw a neurologist. I am scheduled to see him once more, but not sure if he takes my insurance. He said if he doesn't, he will refere me to another neurologist.

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

Can you imagine that she “has to hope her insurance company will pay for her treatment” That made me so sad to hear. God Bless you, I hope you are doing well. Thank you for sharing your story.

Thank you for doing this. You did a great job!

Thank you for making this video, you did a very good job.

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.

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...

Love hearing your story. Hearing bits and pieces which mirror my journey gives me comfort .

Exactly Holly, exactly. Everything you have said is so true. Good luck finding a new neurologist. I live in Florida. The last time I had a crisis the ER Doc told me they are taught about Myasthenia in med school now. Let's hope. I have been to ER's where they are looking in med books to read about the disease. One time I had an orthopedist come in the ER of a small hospital I was at and stepped in because he knew what was going on. Who knew?

Proud of you btw. I only have it in eyes and have fatigue late in the day. You being able to stand and do dishes was moving. Stay strong and thanks for your story. I’m going to start mine.

Thank you for sharing this, I’m grateful for this being newly diagnosed myself.

My uncle is in intensive care with this on a ventilator right now hope he pulls through 😢

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

May all this new treatment takes you to the best place of you! Be blessed, have faith, pray and ask the lord you want to live a good life!