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...
I have had a busy two weeks so I thought y'all deserved an update.
I went from taking 60mgs of pred to switching from 60mg to 50mg every other day. since Tuesday I've been feeling the effects of the taper, weaker legs, arms, face, wrists and hands/fingers. im having the occasional trouble swallowing and had a little trouble breathing on Tuesday but im meeting with my neuro Monday so we will discuss all that then.
However I cant complain because at this point in my last attempt to taper I was finding myself falling down stairs and shouting from the bathroom for someone to help me off the toilet seat. (totally embarrassing then, but a little funny now haha) Anyways im happy with how my taper is going so far, despite being a lot weaker than usual.
My cold is still rearing its ugly head but I can breath through my nose so that's a plus! I think im in the tail end of the cold so im guessing it'll be another week before its gone. because of the taper, its hard to say whether the cold has made my symptoms worse, but it has definitely made me fatigued and achy.
I also started my online schoolwork two weeks ago and its been great. I've always been someone who loves to learn and secretly loves everything about school except waking up early. so im already ahead of schedule which is surprising because I have a very long track record of severe procrastination. its crazy what you can get done when you have nothing else to do haha
So overall im hanging in there and staying positive! im also doing the best I can to embrace all the small victories. it so easy to get caught up in negative but small victories, no matter how little, are victories all the same.
What are your small victories this week?
I folded a load of laundry without having to rest, and the acne on my face from the steroids has started to clear up!
Small victories people!
Annie
I went from taking 60mgs of pred to switching from 60mg to 50mg every other day. since Tuesday I've been feeling the effects of the taper, weaker legs, arms, face, wrists and hands/fingers. im having the occasional trouble swallowing and had a little trouble breathing on Tuesday but im meeting with my neuro Monday so we will discuss all that then.
However I cant complain because at this point in my last attempt to taper I was finding myself falling down stairs and shouting from the bathroom for someone to help me off the toilet seat. (totally embarrassing then, but a little funny now haha) Anyways im happy with how my taper is going so far, despite being a lot weaker than usual.
My cold is still rearing its ugly head but I can breath through my nose so that's a plus! I think im in the tail end of the cold so im guessing it'll be another week before its gone. because of the taper, its hard to say whether the cold has made my symptoms worse, but it has definitely made me fatigued and achy.
I also started my online schoolwork two weeks ago and its been great. I've always been someone who loves to learn and secretly loves everything about school except waking up early. so im already ahead of schedule which is surprising because I have a very long track record of severe procrastination. its crazy what you can get done when you have nothing else to do haha
So overall im hanging in there and staying positive! im also doing the best I can to embrace all the small victories. it so easy to get caught up in negative but small victories, no matter how little, are victories all the same.
What are your small victories this week?
I folded a load of laundry without having to rest, and the acne on my face from the steroids has started to clear up!
Small victories people!
Annie
Thanks Annie. b.
I have only had to take one nap this week at work.
I have learned when my body has an infection how I feel and what to do. (Call the doc!)
I don't get disappointed when my sparkle days turn symptomatic. I don't expect my sparkle days to last forever; but I am thankful for each day the same. I used to have extreme down days when my symptoms would flare after having good days.
Annie, this is a great thread! Thanks.
My victories this week so far: I am caught up on grading, have a viable draft of my conference paper, and cleaned my apartment.
This week I went a day and a half without Mestinon! I'm down to 60-90 per day max (vs 630mg at my max) :)
Be well,
Wonderful thread Annie, thank you for this.
Congrats to everyone on this weeks victories!
Larissa ;)
Barbel
Thanks for this post!
I have a small victory. I went to Kohl's today to buy stuff for my kids (growing too fast!) and shopped only clearance. The cashier told me I won the prize for the day of the best percentage saved. I spent $100 exactly and SAVED $585.
Congrats and be well :)