Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 08-08-2016, 09:50 PM #1
ErinBear ErinBear is offline
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Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
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I think it is good to ask your doctor these questions, because they are very important. But we can provide some information here.

I think symptoms vary with myasthenia gravis, and not everyone may have a crisis. However, it is something that everyone should know about, and be ready to deal with should it occur. I have not had a full-blown crisis which required intubation, but I have had serious exacerbations that required hospitalization and treatment. With a crisis, one can have very severe difficulty breathing and/or swallowing. Breathing support is needed, either with non-invasive ventilation or sometimes with intubation. People can become quite weak, and have tremendous difficulty walking. They might fall due to weakness in their legs, for instance, and need assistance to get up again. They could also have trouble with double vision and drooping eyelids.

You can help yourself avoid this by doing whatever treatment(s) your doctor has recommended for you faithfully. Getting enough rest is important, and not overdoing it in terms of activities. Heat is a problem, and so is stress. If you start noticing any increased symptoms, contact your doctor and let them know. If you are having increased trouble breathing or swallowing, that can be quite serious; it is good to be evaluated at an emergency room. It would be good to talk with your doctor at your next visit about their advice for dealing with a crisis should it occur - find out what they recommend. Hopefully it won't happen to you, but if it does, it's good to know what to do.

Thinking of you,
Erin
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AnnieB3 (08-08-2016), dl4plans (08-08-2016), limpy (08-09-2016)
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