Tams64 - you are definitely not the only one. I think for me that's one of the most difficult aspects to deal with. It just really isn't predictable. I often feel pretty strong and then all of a sudden I don't which makes planning daily life activities very challenging. Really pacing myself seems to help some - if I notice I'm really starting to struggle, I stop because it tends to only get worse from there.

Tams,

I’m right there with you. I’ve opted to exercise at home at the end of my day to ensure that I don’t use up my energy that I need for work and normal daily life earlier in the day. What’s interesting is that I recently took a trip to Disneyland. I walked up to 8 miles per day. It was slow, I was on my meds, and I took a lot of rest breaks. But I was really happy I was able to maintain that level of activity as long as I allowed for adequate rest in between!
I typically have 4-5 completely manageable days and 2-3 really difficult MG days each week. I do hate not know which will be my bad days. Makes planning really tough.
Becky

Hi I don't know if this is mg related or not but recently it seems that when I tried to walk it's like walking into the surf everything seems to be pushing back my hips hurt the back of my legs hurt and my thighs and my feet I don't know if this is mg or just something else and it seems I have days where I can't keep my eyes open from the time I get up I don't know if it's just falling asleep while I talk to you it's weird have no clue but m.y legs and my thighs and my hips hurt all the time when I tried to walk some days more than others is this an mg thing or something else

I have experienced a myriad of symptoms over the past 20 years from being on life support to experiencing a few periods of remission and what I have learned is that exercise, healthy diet including herbal supplements and most important relieving or reducing major stressors can improve your health and gain some stability and control.

Sorry you are having problems.
If I remember right, you started hear over a year ago or more and were taking mestinon at the beginning.
Are you on other medications now? I think most of us get MG under control when we include an immune suppressing medication along with mestinon.
When I wasn't satisfied that my MG was letting me function OK, I was very persistent with my neuro in telling her that I wanted to not just get by, but be functional at a level that life was enjoyable. So that meant we treated heavy on immune suppression (I used prednisone). I think we have to be strong advocates for our ourselves. MG is supposed to be treatable and let us function "normally" according to most of what we read online. I believed that and decided in the balance of immune-suppression/ MG I would prefer slightly more treatment than less. And so at about 5 months I was functioning normally again, trying to taper down the prednisone to the lowest level that kept me there. Along the way at about 1 year MG went into remission and stayed there now for 5 years.

Good Luck
Russ

Thank you so much everybody who responded i really love that i can come on here and ask these questions. Rhanson- I have been on Imuran for a year not take extended release at night and of course the short span one during day. I was able to finally taper off 60 mg of prednisone and so far have been doing good with breathing i do notice even with all my meds i take its still hard for me to get overly active and i notice the chewing swallowing act up but with rest for a few days helps. allthingsjoy- *HUGS* its exactly how i get each week and it just gets frustrating. Thank you again for letting me ask these questions.

Tams

I take it you are taking Mestinon as well? That's usually the one that we are encouraged to vary (self-medicate) to off-set the variations we might have, be that daily or less frequently. Less frequently is what I would expect after the first year of diagnosis when most of us stabilise or even go into remission.