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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Muscles & Bones
/ Myasthenia Gravis Support Group

Member Group for Links and News

bweeds
bweeds
bweeds
Introduction to the Links Member Group
Posted on 09/10/12, 06:43 pm
We have started a Member Group so that we can access frequently used information, articles and discussions of interest, and some other writings important to the main group.

Here is the link to the Member Group. Be sure to click "view all " in the bar in discussions. At this time there are three pages.

http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news

Also be aware of the information available on myasthenia.org which is the web site for the.Myasthenia Gravis Foundation of America. Many of the publications and information there are linked in these discussions:

Suggested beginning reading for new members:
Overview of MG
Manual for Healthcare Providers
Myasthenia and Medications
Tips for Daily life
etc, etc. etc.

When you ask questions, you may be referred to this group. If you ever have any problems with the links, please inform the founder or one of the administrators.

Any one can contribute here and there is a discussion about posting a link.

These pages are primarily informational and any questions about what is posted here are better asked on the main page.
bweeds
bweeds
I would like to add the reminder that all medications have storage requirements and some of them like Mestinon (pyridostigmine) and Imuran (azathioprine) have very narrow ranges for temperature. There are other requirements for medications-- do not put in kitchen or bathroom because of humidity, no light exposure, etc. Most of our medications should not be carried in the trunk of the car or packed in suitcases on airplanes (which you know, especially in case of lost luggage). Short exposures outside the range may do no harm, but we purchase medications sometimes for three months. The refrigerator and freezer due to humidity and LOW temperature are NOT solutions for many medications. What a pain! :-) b.
bweeds
bweeds
Since the last bump, I added to the overview of MG, an excellent paper by Julie Rowin (an award winning neurologist in Chicago) that Rosie found that emphasizes the distinguishing characteristics of MG and ALS based on CLINICAL FINDINGS. If you have not been diagnosed, or examined in this manner, you may find this especially relevant.

Marie has added a discussion on Urinary Problems and I have linked our latest discussion about assistive devices and tips to the "tips for daily life" discussion.