Looking For 10 Individuals to Share Their MG Story in a Community Spotlight for Myasthenia Gravis Awareness Month (June)

[Mark Harrington]

I’d like to be part of this.  My dad had MG for the last fifteen years of his life and his birthday is June 20.  It would be a cool way to honor the finest man I’ve ever known.

[shalyce-anderson]

I would love to share my story if there’s still availability!!

[deborah-white]

Hi – I would like to share my story if you have a spot left. Thank you!

[pearl-moffett]

Hi,

I would love to share my story if you still need someone. I didn’t know I had MG until one day I ended up in the hospital with a severe crisis.

Thank you,

Pearl

[michael-adam-weinberg]

I would welcome sharing my MG experience if you still seek contributors. Michael

[david-s]

I too will add my experiences if you wish.

S

[andrea-b]

I would welcome the opportunity to share my story living with refractory generalized MG if you are still looking for participants.

Thank you, Andrea

[suzanne-e]

Hi,

I’m happy to share my story if you still need contributors. Along with MG, I’ve developed another autoimmune disorder, POTS / dysautonomia, gastrointestinal issues, and several chronic overlapping pain conditions.

[jonathan-a]

Your stomach issues might be connected to your MG and MEDS.   When I landed in the first hospital, for some screwy reason, they started dumping the steroid PREDNISONE in me  .. and I was still undiagnosed about having MG.

My two RARE DISEASE RESEARCH FOUNDATION REGISTRIES  (ALL-STRIPES  and PICNIC HEALTH)  … finally recover all my hospital papers.   I was given over 90 meds including the sedatives MORPHINE and FENTANYL.  The papers said I was also given PANTOPRAZOLENE (sp?)   … and it stated that ….  that was being dumped in me, as a prophylaxis (sp?) because  PREDNISONE and their other meds could make me get stomach issues and GERD,  which I never ever had.

My new doctors say be  VERY CAREFUL, as you can get bad MED interactions  … such as for MG patients, the sleep aid MELATONIN can be dangerous if you are on CELLCEPT or other IMMUNO-SUPPRESSANT drugs  … as MELATONIN tries to revive an immune system that CELLCEPT is trying to suppress.

[jodi-enders]

This pdf is very useful for referencing cautionary drugs categorized by average risk posed, http://nebula.wsimg.com/903ebe2c701eb4e72e3211dc9fb9064e?AccessKeyId=7F50FBE19A111D19DDAC&disposition=0&alloworigin=1

– Jodi, Team Member

[suzanne-e]

Thanks for your share, Jonathan. Unfortunately, the GI issues cropped more than a decade in advance of MG. I hope you stay well / stable enough to avoid the hospital and all it entails again.

 

Thanks for this resource, @Jodi!

[michael-morris]

I wrote my story to this website a few days ago so hope you find it and use it

 

michael morris

[jennifer-thompson]

I will add my story as well. I have overlap conditions as well.

[oldmanFox]

I will be honored to share my story of this disease called MG. I’ve had it since 2010.

[oldmanFox]

MYASTHENIA GRAVIS
My Story

I was always very active, outdoor oriented. Then in 2009 I was diagnosed with aggressive prostate cancer, had robotic prostate surgery, all within a month. I went back to teaching in August, got the H1N1 flu and was out for about a month. Then in December I developed pneumonia and was out most of that month.

In January 2010 I woke up one morning, sat down to my cup of coffee. I started feeling weak and my arms and hands were trembling so bad I couldn’t hold my coffee cup. I would have to lean against the walls of the school hallways as I walked. I thought I had Parkinson’s and saw a neurologist.

My neurologist diagnosed me with general MYASTHENIA GRAVIS and said I was very close to a MYASTHENIC CRISIS. He admitted me to the hospital, started me on a regime of 39 plasmapherisis treatments and meds. I had to retired from teaching that fall. Life has been very difficult but rewarding.i have been through one remission but it only lasted less than a year and the battle with MG has been a daily, even hourly struggle with muscle strength and breathing. I have learned that each breath is a gift from God and that my strength comes from Him.

Family and friends won’t always understand how MYASTHENIA GRAVIS affects a person. They may call you lazy, bum, they may get angry and upset at you for not being able to do what you used to do. Your marriage or relationship may fail because of MG.

The one thing that a person with MG has to remember is that YOUR HEALTH, PHYSICALLY, MENTALLY, EMOTIONALLY and SPIRITUALLY affects your disease. You MUST MAKE YOUR HEALTH YOUR PRIORITY!

[brice-bowman]

I would love to share my MG story, which began in February of 2020 after returning from a film shoot in Africa.

[shalyce-anderson]

I would love to share my MG story. I’m 25, was diagnosed at 19.  Mg has changed my life dramatically but I was still able to get my masters degree in social work to help others!