Me and Myasthenia Gravis

my quick story of my diagnosis of MG

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Science & Technology

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• 20101018

[PeacfulDeath214]

Thank you so much for sharing. I got on the pc cuz I was feeling so alone in the battle with this disease. I have had IVIG 3 times and plasma 3 times. IVIG doesnt seem to help but plasma makes me worlds better. I have had this disease for 9 years and had a thymectomy 3 years ago, no help so far, Mestinon doesnt work for me either. Im also on Cellcept and prednisone. I have to taper down at 2.5 mg of prednisone at a time. hang in there!

[vw4causes]

Hi Mikey, I love the way you talk about yourself in such a humble way. Sorry about you getting MG and all that happened afterwards.

Hear you like cars; hope you'll be interested to read about my cross country drive for MG Awareness in my classic VW bus at VW4causes.

Would love to see you on my VW's FB page at 'The YesWeCan CamperVan'.

Thanks for making this video.

Would like to post it on our website - is that OK?

Take care,

hugs Carole

[corljl]

Mike, thanks for sharing your experience. I have just been diagnosed with MG. But I have had intermittent syptoms for the past 5 years. The systems started with diploplia when I was under a lot of stress, then the double vision contiued on and off. My doctors suspected I just needed rest and indeed, a little rest would return me to about normal. At some point I began experience "swim head" prior to the onset of double vision. This year I was diagnosed with MG.  Mestinon does't help so far

[Andearea]

oh no that sucks. I wish you the best of luck. You really do not look 13..

I'm afraid to try mestinon because of all the side effects.. but are you saying that your very first dose ever gave you relief in 20 minutes?? If so i'll try it to see if it works.

Thanks so much i really do appreciate your advice.

Andrea

[TheOfficialRiLeYrEaP]

@Andearea  hey im 13 years old , i started taking mestinon last summer , for me it really worked , it took about 20 minutes before it started to work , im actually just surfing the internet today BECAUSE my symptoms have occurred

[lidieth17]

Hola, tengo MG hace 18 años y llevo una vida normal, tomo neostigmina y me gustaria saber si hay mas personas en Costa Rica con esta enfermedad, ya que conozco muy pocos. Se pueden comunicar a RED DE MIASTENIA COSTA RICA en facebook o al correo vickyla17@yahoo.com

un abrazo

[Andearea]

hi, my neurologist suspects i might have MG.. i am experiencing swallowing difficulty and liquides consistantly go down the wrong tube. do you experience this? he wants me to try mestinon to see if if works. did your very first dose of mestinon work right away or do you suspect it might take a few days or a week?? just curious as to how many doses before it begins to work for the first time. .. thanks SO much.

[m1o2o2n3]

hi i am 32 years old , from saudi arabia , i have mg for 22 years now , thank you for sharing that

[jazzmica]

Thank you so much for sharing!!!

[Pernille574]

Thanks for sharing your storie, I am from Denmark, and i was born with MG. There are not a lot of people in DK who has MG, so it´s good to hear other peoples storie with MG. So thank :)