Quote:
Originally Posted by Kage12
Perfect timing on this. I think the term progressive is, to some extent, difficult to quantify. I, too, have read that it isn't progressive, but it often does get worse. I think that they mean over a long period of time that it doesn't progress, like, say ALS does (which you mentioned). Right now, I am progressing. I started 2 years ago with eye issues that I blew off. Last year that developed into eye issues that I could no longer ignore, plus progressive weakness through my body (arms, legs, hands), and some trouble with breathing that I & my doctors chalked up to asthma. Then here we are today. Another year later, with worsened symptoms all around and breathing that may land me in the ER. I've been battling it all weekend and my neostigmine is acting like a placebo & doing nothing. So yes, to some degree, I believe MG is progressive. But I guess in the big picture, no it isn't because it "typically" doesn't lead to total disability or death (sometimes it can, but not usually). Confused yet?  |
Using the right terminology will make it less confusing:
progressive= getting worse.
fatal= causing death.
Life threatening= may cause death, if not properly managed.
Placebo= makes you better, even if there is no known pharmacological agent involved.
Not responding to a known pharmacological agent that made you better before=dangerous.
total disability?-Which illness leads to "total disability". Would you define Steven Hawking as "totally disabled"? Ability and Disability are not the result of the illness alone, but the result of the way in which society helps people fulfill their abilities even if they have disabilities. (in some ways we all have abilities and disabilities, even healthy people).
Death-we will all die some day. I don't think there are clear answers as to how much MG or its treatment increases our risk of dying at an earlier age.
MG can definitely be a life-threatening or even fatal illness if not recognized and managed properly.
My personal opinion=If you have breathing difficulties that do not respond to neostigmine, it is time to go to the ER or at least get a proper evaluation by a pulmonologist who has a good understanding in neuromuscular diseases.