LIVING LIFE AFTER LIFE SUPPORT ...MYA... - Myasthenia Gravis...

Myasthenia Gravis Association

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LIVING LIFE AFTER LIFE SUPPORT ...MYASTHENIA GRAVIS GRAVIS CRISIS

faithhope421 profile image
9 Replies

I am so grateful and blessed to still live ,life , to have a heartbeat , respiration without assistance ,brainwave activity ,swallowing ,talking , walking ,and having the awesome ability to have heartfelt emotions again . I'm recovering from a MYASTHENIA GRAVIS CRISIS .Respiratory Failure ,accompanied with Neuro Muscular Failure .However, after a couple of days on Life Support , IVIG , Rituxan , and Plasmapheresis Infusions ,I did recover , yet to live another day .Hoping all is well with you ,emotionally , physically , and spiritually .I encourage you to take care of YOU . Our diagnosis sometimes rob us from the freedoms that are freely available to us all ,due to unforeseen complications ,we can't always obtain that same freedom . Again I'm grateful ,I'm still here to love , share , care , give and to live .Sending peace , hope ,joy and happiness your way , in everyway !

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faithhope421
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9 Replies
linkirby profile image
linkirby

Well you have certainly been through the mill and certainly very scary. I also have myasthenia which was diagnosed in February 2017. I couldn't believe how rapidly I deteriorated and did spend 8 days in hospital. Breathing was my biggest problem however more or less back to normal thanks to medication. It certainly makes you appreciate life more and not to take things for granted. It doesn't matter how rich you are your health is the most important. I hope you get back to normal asap. Don't know if you are aware there is an association for Myasthenia, Myaware, which has information about the condition.

Take care and keep safe.

Lin

faithhope421 profile image
faithhope421 in reply to linkirby

You're so right ,this condition is a silent killer ,that is ever present .I was diagnosed 1987 .Have experience many episodes of Respiratory Failure ,had my Thymus Gland removed ,Yes I am part of This Foundation .I am a Moderator for a Focus Group where I live , and This Foundation Wrote 2 Stories about my case ,and I actively participate in Research targeting my condition ,thank you for your encouraging words , I sending to you ,restoration of renewed energy and relaxed breathing ,stay informed and safe !

Pollynolongerinagony profile image
Pollynolongerinagony in reply to linkirby

hi linkerby thank goodness you are safe and thank you for sharing your experience. I just wanted to wish you well, best wishes polly.

blondie120 profile image
blondie120

Hi , im so pleased your feeling better, ive had this disease a long time an it took so long to get diagnosed , i find nobody really understands what i go through just to work 4 days a week makes me so tired , but i have older children one of which Is special needs who needs me so much an i also have a lovely doggie who is my sweetheart who survived lymphoma they say he is the exception so im in awe of him , i hope you continue to be well, stay strong all the best to you x

faithhope421 profile image
faithhope421 in reply to blondie120

Thank you for your well wishes ,I understand where and what you are talking about ,you're right ,people don't understand the unseen suffering we experience ,day by day it changes ,but not for the good ,I can relate to your plight having a Child with Special Needs ,I am a mother with 2 sets of Twin boys ,all 4 of them , has a Diagnosis of ADHD ,BIPOLAR . AND AUTISM .This is yet another challenge I continue to face ,even as Adults . Sending more strength ,peace ,joy and my compliments to you .to have been chosen by God to love and take care of His Special Angels ,who need more of you ,Stay strong !

Pollynolongerinagony profile image
Pollynolongerinagony in reply to faithhope421

hi again faithhope, I am in awe of your strength and know where that comes from, you are your childrens' guardian angel, and thank God you all have each other to be kind and to love. blessings always, polly

faithhope421 profile image
faithhope421 in reply to Pollynolongerinagony

Thank you for your kind words ,you are so thoughtful ,it is by the grace of God I can live ,love ,give ,strive ,survive ,and be the best Me that I can be .sending gratitude from my children to you ,we are so blessed and highly favored ,know that you are too .stay strong ,encouraged and knowledgeable about the Silence ,the Unseen ,for those who don't live with this diagnosis the Unknown ,MYASTHENIA GRAVIS ,it's real ,it's really REAL, be blessed and well .Again thank you so much !

Pollynolongerinagony profile image
Pollynolongerinagony in reply to blondie120

hi blondie, thanks for sharing your experience, all info arms us for coping with MG, you are amazing and I'm grateful lovely folk like yourself take the time to share and care, keep well, best wishes, polly

Singer46 profile image
Singer46

Hi Faith, good to hear from you , my name is Susan , I had amyasthenia crisis following a kidney stone operation , I wasn’t diagnosed with MG Until months later , I asked he Neurologist if he thought I had had MG crisis , he thought that it was. Now on medication .

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