Ugly face of Myasthenia Gravis

It was not easy to make this video.I had to remind myself Why am I doing this - Myasthenia Gravis MG is very rarely disease.
Music by Adele - Chasing Pavements

Category:

Education

Tags:

• thymectomy
• thyroid
• cancerMG
• Myasthenia Gravis
• Prednisolone
• thymoma
• thymoma cancer
• autoimmune diseases
• steroid
• Prednisone
• mestinon
• antibodies
• life
• ocular MG
• muscle
• weaknessPrednisone
• side
• effects
• inspirational

[looneybin01]

MG is a rare disease, I learned that when i my grandma went into a crisis and the closest hospital around her had no idea about it so she had to be on flight for life to go to the next closest one. She thought it was the end but thankfully after a couple treatments of plasmapheresis she got better. It is in remission right now with having it for 40ish years now but her feeling is that if she has another crisis it will be her time to go. Despite how you feel, be strong and dont give up.

[tanyapia1]

@looneybin01 Thank you on your kind comment .

All the best to your grandma :)

[MustafaAlwash]

With all my heart I hope you will get better.

Did you use Mestinon? I work for the manufacturing company and they say that it's working. t.c. Dr. Mustafa Alwash from Iraq.

[tanyapia1]

@MustafaAlwash I take Mestinon each day ( and lots of other drugs )

They help but..... when you have bad time like me now ( My fatigue is frustrating in these few weeks ) it is not enough :)

Thank you on your kind words.

[fairyprncsss]

thank you so much for sharing this and making this video! My mother has had MG for years and we are so afraid that she has just given up on life. I'm hoping that this video will inspire her to fight a little harder. I hope you are doing well.

[tanyapia1]

@fairyprncsss I can not tell you how much your comment means :)

Mental strength and approach is very important but please have patience and understanding with your mum.

MG is very frustrating - for all .... sometimes we hardly understand what happens to our body. Impossible battles are still possible -If you surrender to the wind, you can ride it .TM ..... all the best for your mother ......and you :)

[vw4causes]

I have driven 5500 miles across the USA (where I currently reside) for MG Awareness, in my old 1971 VW bus to get as much attention as possible. I'll add your video to my website.

[vw4causes]

Made me cry and I have seen so much MG I thought I wouldn't cry any more. My Mum got MG in London in 1944, aged 20. She had me when she was 30. I am now 57 and am finally talking about this little known disease. It is not as rare as we think, you know. But it is missed and misdiagnosed and patients are still waiting years to get helped. I would love to hear from you when you have the energy to contact me.

[GamerGirl9295]

I am 16 years old and recently noticed my left eyelid drooping. After about a month with my symptoms fluctuating me and my parents decided to go to the doctor. My first visit was to my regular eye doctor and my condition puzzled him. Several trips to my family physician and an eye specialist they ordered blood work for mysthenia gravis. I am currently waiting to get my results back. You are beautiful and inspiring. Thank you for your video. it has helped me ease some of my fears.

[misscap94]

I have Myasthenia Gravis, I was diagnosed with it almost a year ago and I'm only 18, I've been having the droopy eyelid in my right eye for 3 years before doctors narrowed down to MG, a year ago is when I started have muscle weakness, it was hard for me to sit up in bed, speak, swallow or drink water, brush my teeth, or write. It was the hardest time of my life, all I could was sleep and nothing else. My sister and mom had to help me. Sometimes it felt like I was completely useless. Thank you :)

[RiPPeRsTaTuS]

Beautiful message and beautiful face.

[ktyoruga1]

Hi Great video thank you. I am also a MG patient, since 2005 I think it descrives perfectly the dark side of myasthenia. The hardest thing I´ve coped with is that "brain fog" you pointed out, some times I don´t know where am I and even takes me some time to do simple reasoning, I Have Mg Osserman II B and I have to deal with my condition on daily bases, but some times when it gets worse it starts with severe diziness, double vision, nausea, vomiting diarrea and of course a big headache!

[A2theK1]

I also understand now what a support group is and how it can benefit him in his life as he is over 60 yrs of age. I wish there was a cure for MG as it seems like a terrible thing to have to deal with. thanks for your story as im surfing the web trying to gain more info about MG.

[A2theK1]

im trying to eduacate myself on MG as my father in law has it and I have seen him up and down so many times with no energy or not being able to get up out of a chair or to go get the mail or either difficulty breathing sometimes. I want to be there for him and understand but sometimes its hard being I dont have it. My wife and I starting attending monthly MG meetings to support him and be there for him in lawrence ks at the library. Im starting to understand it better every meeting.

[julianaumes]

For the past 7 months I've been fighting symptoms similar to Myasthenia Gravis and I saw a doctor this week that believes that is causing my muscular problems. I really appreciated being able to see this video and gain insight on what it can be like. Do you have any suggestions for me? I took my first dose of pyridostigmine today and it seems to be helping!