worth repeating
 

so, I know Ive asked this before but Im going to ask again because there has been very little change.
Is it normal to never be able to walk without assistance of a cane or walker unless you are in remission?
Ive had MG for 20 yrs now but for the past year, my legs just havent snapped out of it. Even with mestinon and steroid treatments. My face and hands and breathing improves but not the legs.
Is this from yrs of MG exacerbations?
Will it stay like this?
Are there others who rely on cane and walkers?
(I cant use chair cuz arms are too weak to roll myself)

Hi. I use a rolling walker when I'm out and about (which isn't that often, actually...). I used to use two canes, but my arms get too tired. The walker's great, because it has a seat for resting. Plus, everyone's so polite to me when I'm using it. But if I get worse and the walker's no longer enough (I had a week like that not long ago), I will need either a wheelchair that someone else pushes, or a scooter. Rolling my own chair would be out of the question.

I have only had MG for about a year, so I can't say whether this is "normal" for MG. Even if I really have MG, which my doctor doubts but I don't (not really), mine's not a typical case of it, and the only treatment I've had is Mestinon.

I'm sorry you've had such a discouraging time. I'm really glad you've had some improvement in other areas, especially the breathing. I get frustrated with my trouble walking, and worried about what's going to happen next, but I'm so grateful that I've never had breathing trouble.

Abby

Not sure what normal is for MG since I hear it's a snowflake disease and therefore everyone is different. . .but for me, when I was undiagnosed and without medication I was so bad off I was in a wheelchair because I was unable to walk or hold my weight at all when the disease hit the legs. And years later, after a remission, when I went into crisis but was finally put on some medication (mestinon and prednisone), I still needed a walker but never got so bad as to need the chair again. It wasn't until I was on all the correct meds (IVIG) and got strong enough that I was able to walk unassisted. For me, it was all med-related.

I hope that helps, debra

yeah Ive got that walker (the cadillac of walkers)...insurance wont approve scooter so when there will be alot of walking , I stay home.

And thats another thing, friends and family read the stuff on the net about MG that says "patients expected to live relatively normal lives"and question why I cant walk ......So I guess this is just normal for us (generalized MGers)

Hi draggin'
I have generalized MG since May 2007 but for the first 6 or 7 months, my legs were not affected contrarily to my arm, jaw and swallowing capabilities. Then within 2 weeks, my legs became weak and my arms rather strong...!
I never had breathing problems.
I was (and still am) treated my Mestinon, Pred and Cellcept.
A year ago, before my relapse, my walking capability was rather decent, like a gentle 2 hr hike but now it is reduced to a 1 hr walk on flat ground although I regularly pratice 25 minute swims...
I think of using a stepper but 2 minutes are enough. At one time, I did that 3 times a day and it was worthwhile.
Maybe part of the problem is muscle atrophy due to lack of exercise and Pred.
MG is definitely a strange ailment!
Maurice.