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...

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dktloans 08/30/2015

I'm coming up on 2 years with MG. I take prednisone and imuran and have ivig every 4 weeks. Mestinon didn't do much for me plus it messed up my stomach. My vision is getting vary bad I need to keep a magnifying glass close by when I read or work on the computer. Fatigue has become a daily problem. My legs feel like they 500 lbs each. I live in Florida and the heat is a big problem. The ivig is not working and I think that plasma pherisis is next. The most troubling new issue is shortness of breath.. I'm concerned that a crisis is coming, I've never had one.

Is this a familiar scenario to any of you.

ray2me 08/30/2015

The only advise I can give is get more rest -- as hard as that may be . The more rest you get the more chance you have to restore the acetylcholine that is the cause of MG to begin with . Sit as much as possible and take naps as often as you can . Best of luck to you , Charlie

migurl 08/30/2015

Good advice Charlie!! I've lived in Florida and I could never do that again. I was a child when we lived there and it was miserable. If I wasn't in a pool or in the a/c (which we couldn't afford) I just couldn't function. Can you imagine having Chicken Pox and no a/c. It was a hot, itchy mess. I realize that few people can afford to pick up and go to another state that is a bit cooler through the summer but the heat can cause a crisis. if you are repeatedly exposed to the heat and it worsens your shortness of breath you have a problem. The humidity is a huge factor in the heat, as well. Like Charlie advised, get as much rest as possible, drink lots of water, stay as cool as possible, stay in touch with others in case you find yourself in a jam somewhere and above all DO NOT HESITATE TO CALL 911. If your breathing worsens at any point you need to call 911 right away. Don't let your sensibility tell you to wait it out. If you wait it may be too late. That's the best advice I have for your situation. Please be careful and hugs to you.
Aloha!

tediii 08/30/2015

Yes this does sound familiar. I also was at 2 years, taking Prednisone and CellCept; however, Mestinon did and does work for me. I spent last March in the hospital in crises about two weeks after the shortness of breath started.

Bamboolilly 08/31/2015

I'm sorry you aren't feeling better. I live in SW Florida and it has been the hardest summer yet. I can't go outside for more than 10 minutes. I had Ivig on Friday. I was feeling pretty good the next day so I thought i would shake out the dog beds and vacuum. Knocked me on my butt and I was in bed all weekend. We won't be in Florida next summer.
It is important to drink lots of water. I can't make it to 4 week intervals for Ivig.3 weeks 3 days is my max. You may want to talk with your neuro and see if you can go to every 3 weeks instead.
Healing thoughts,

Barbel 08/31/2015

Rest as much as you can. Keep in touch with your neuro. The heat zaps me too. I am on the Gulf Coast.

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