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...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

newbie

needles
needles

I was officially diagnosed with MG last week. I feel fortunate that I have not had the symptoms that most of you have had. I have weakness mostly in my neck and legs. Swallowing can be an issue which tends to scare me at times. I have been seeing double for a little over a year now. Went to an opthamologist that wanted to treat the double vision with Botox injections. I wasn't thrilled so put the injections off. I found a new opthamologist who listened to my story and wants to take it slower. He is the doctor that found my MG! I thought my weakness was just due to getting older.


Before the holidays I was having extreme difficulty with the double vision. I was so upset that I couldn't sew or drive anymore so I decided to take prednisone for the swelling. I am now down to 20mg. and will be lowering my dosage this week when I visit the opthamologist. The plan is to get off the prednisone and try something else for the double vision if the pyridostigmine doesn't help. For the past month I have occassionally had leg cramps at night. For the past 2 weeks they come on several times a night, every night. Last night I wore my night brace for plantar fasiitis. I slept great. The only problem was when I removed the brace. My foot cramped up in the toes and arch. The pain is so bad I can hardly walk.  I would ask a family memeber to massage the foot but my family is still trying to figure all of this out and are not helpful at all. Does anyone have any suggestions for the cramping?

flutebell
flutebell
I find my legs cramp more if I don't drink enough fluids during the day. A vitamin B complex helped too. I use a heated microwave bag on my legs and feet too when the pains are bad.
Flutebell
needles
needles
Thank you flutebell! I haven't tried heat yet. I am taking a B complex. The water is an issue since I teach kindergarten and only have breaks every 2 1/2 hours- 3 hours. I have been increasing my water, but I know I still don't drink enough. I'll keep increasing the water.
grecogirl
grecogirl
Drink coconut water, high in potassium. Watch the labels for sugar content though. You can mix it with regular water as well. I read where Mestinon depletes potassium and was taking a potassium supplement, then someone told me coconut water is high in potassium so I started that. I never had the cramps though. You should be able to have a water bottle in the classroom I would imagine and if not get a note from your doctor stating you need to stay hydrated throughout the day. It would be good for the kids to see you are drinking water on a regular basis throughout the day as well.
needles
needles
Thank you grecogirl! Coconut water sounds great! Thanks for the added info about the sugar content. I will watch what I try. I can drink water in the classroom. I just cannot get out of the room to use the bathroom. I have been sipping the water and that seems to be helping with the bathroom issue. I'm off to the market to pick up some coconut water.
wbdolphin
wbdolphin
No suggestions for the cramping, but did want to mention that Botox is one of the "absolutely not" medications for those with MG. be glad you declined it!
CWFK
CWFK
I'm wondering if you've had any relief from you double vision? I've had it for over 8 months now and even at 80mg of prednisone every other day I've had no relief.
needles
needles
80mg every other day worries me. That is such a high dose, I would think going on and off the prednisone every other day would confuse your whole body not to mention your hormones.
I have been on prednisone for a little over 2 months. It was my choice to start the prednisone because the pressure on my eyes was awful. I started with 60mg and am weaning down to nothing. I still have double vision, but my eyes are not bulging as much, The pressure is definitely down. I can now tilt my head back while looking straight ahead and see normal. I just started Mestinon 3 weeks ago which has also helped. I also have optical graves disease. Hopefully my vision will improve over time since I started other meds as well.
Has your doctor given you any suggestions? My doctor talked to me about many different options.
CWFK
CWFK
Hi, the every other day dose is pretty common - it's better for your adrenal glands. We agreed yesterday to go back down to 60mg every other day since it seems to be doing nothing for my vision. It has taken away my slurred speech, muscle weakness and exhaustion though. I'm very frustrated that nothing seems to help the double vision. I tried Mestinon but it didn't help any of my symptoms.