Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
responsability of all of us in any blog,
my name is Andre (fighter) i haave neglected for a while to sign my name so some people do not know me and seems that give me trouble to be heard.
but also it goes deeper, i have for the last couple of years reading and answering posts, i being a mg patient.as soon i became one i have spent countless hours in the net reseaching all about mg, where and how we get it, discovery, and what was done in all those years by the medical profession ect.ect.
in some ways i have been a messenger delivering the best info available in all faces of mg. researche in what we expext of meds, dside effects and overall. costs ect. i have allway relay in this blog the need to checks all meds. taken a nd give the site of drugs.com. the best and honest site for that purpose,
i alwaysanswer as clear and honest all requests, sugestion ect,, i never try to up someone, since actually i am only a messenger.
but some one as from day one, attack my responses as fauls information, and stated to insult me, denigrading my responses,names callin
names calling, bulling me as much as possible, that person has flip flop on me from day one, and know his name.
1) yes we are entitle to agree or disagree, but it has to be done with polityness and respect for each other
2) we are not allowed to denigrate, muck,insult, bully, name calling anybody each of us in manny ways are messengers and WE DO NOT KILL THE MESSENGER
every response , advise, sugestion that we may give to each other, is because we went trhu the same road, and hope that every body can get a piece, or bit that may help.
so i urge every body whom like creating distorssion by mean full posts stop,
the bickering should not return,
lets be civil and only respond to te request of any mg patients, it is difficult for heach of us to keep control of it, and not embarque in beeckering or worse
tanks to all
andre
You seem like a nice fellow who is trying to help. What drew me to you was you said you had an exacerbation when your daughter passed away. My dad just recently passed and I am not feeling well. I guess when a loved one passed you finally realize how precious life is. Disagreeing is ok but insults are not. My dad was the kindest man I’m trying to be like him.
thank you for your kind , and my sincere condoleances for your father loss, just dont let your sadness become depression
i became mg. patient in early 2011, our daughter passed away in 2012 after having be a mg patient since 2011, she was a juvenil diabetic with lots of complications and died of pancreatic cancer,
alson my wife since 2010 and 2014 had 2 csancer operattions, but for the last 5 yrs. she is in full remisssion
so all that and what was going on with my mg, and my insurance whom in 2013 refused to py for my ivg, since it was costing them $35.000 every month
I was told that the reson for refusal was because the insurance would not pay for medical therapy, tried to fight them, to no avail, even that i told them that any and all meds, they they where given and paying where therapy, like it or not.
so i had to carry ut all that weight on my shoulder snd try to control my mg.
finally it got the best of me and almost detroyed me, i was one step from dieying, but i have fought so strongly because my mind was free of all distracting matter, i was able to rebound and since 2/18 i am in full remission
due to the fact that i was able to control all emotions that almost put me to pasture.
as i was getting better and better, i was able to relay all my experiences and the importance of learning to have control of 3 things emetions-exerction (sports and activities) and a very important fact that we have the tendency to not follow, its our intakes.
so agin thanks, and best whishes
Andre
thanks again, i hope so, that people will at least take in consideration my words, we are all adults and every body know what they have to do . i at least the suggestions, advise requested,, are given with haven going thru the hard times as all, but i am a erson whom thru life has been allways using commun sence and logic, principaly in the hardest times,
even that i have 2great doctors 1 neuro and 1 endo, thru the years i have a great relasionhsip, which is the key to be able to surpase of the road map of mg, as long that existe and full cooperation from them, as i need them as much they do mi, beacuse all of our experiences can help some one to control and manage this dreadfull desease
i know you understand,as for my name, i dont consider unusual as i am a french men of birth
best of luck Andre