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!
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
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.
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
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.
@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
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 :)
Good luck Mike. I have a tyoe of myasthenia called Lambert Eaton Myasthenic Syndrome (LEMS). Most of the same symptoms as MG. Often misdiagnosed but evidently a lot rarer. Often associated with cancer, as an immune system over reaction. My symptoms crept in very slowly over a year starting with a very dry mouth and then dry eyes, then droppy eyes and then concrete legs. Head heavy on the neck, hard to breathe. Pretty scary. Hope you are doing ok presently.
I have had all of your experiences. Especially the drug suspicions, so funny, made me want to try them. LOL. I have the same consistent MG symptoms. When you do decrease prednisone it has to be 17.5mg divided doses, and 20 ever other day, for 2 weeks, then 17.5mg for 2 weeks, then 15mg ever other day alternating 17.5mg so on and so on. I did that with great success. (Borat accent)
Good Luck to you and thank you so much for sharing! Karin
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!
PeacfulDeath214 6 days ago
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
vw4causes 2 weeks ago
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
corljl 2 weeks ago
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
Andearea 2 months ago
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
lidieth17 2 months ago
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.
Andearea 2 months ago
@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
TheOfficialRiLeYrEaP 2 months ago
hi i am 32 years old , from saudi arabia , i have mg for 22 years now , thank you for sharing that
m1o2o2n3 3 months ago
Thank you so much for sharing!!!
jazzmica 4 months ago
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 :)
Pernille574 8 months ago
hi mikey i have mg too...i m from india...saw you on bodybuilding website
poojasonik 8 months ago
Good luck Mike. I have a tyoe of myasthenia called Lambert Eaton Myasthenic Syndrome (LEMS). Most of the same symptoms as MG. Often misdiagnosed but evidently a lot rarer. Often associated with cancer, as an immune system over reaction. My symptoms crept in very slowly over a year starting with a very dry mouth and then dry eyes, then droppy eyes and then concrete legs. Head heavy on the neck, hard to breathe. Pretty scary. Hope you are doing ok presently.
shazzabelle2 11 months ago
I have had all of your experiences. Especially the drug suspicions, so funny, made me want to try them. LOL. I have the same consistent MG symptoms. When you do decrease prednisone it has to be 17.5mg divided doses, and 20 ever other day, for 2 weeks, then 17.5mg for 2 weeks, then 15mg ever other day alternating 17.5mg so on and so on. I did that with great success. (Borat accent)
Good Luck to you and thank you so much for sharing! Karin
Thekarinski69 1 year ago
Great video Mike!
pajejoci 1 year ago
im regina from Philippines. i also have myasthenia gravis.. it was dignosed last 2007.
prettyahya 1 year ago