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...
For everyone: There is a main board for MG, but also the option for a member to start a "member group" for a specialized purpose or to concentrate on some aspect of a problem. I thought it would be nice to put a lot of our links that were getting lost in postings together so both new and old members could find them. It does not substitute for questions and discussion and sharing of experiences--most of it is duller than that :-) But it does provide a place to post links to current thinking and treatment of MG and where to find things such as information cards for wallets, lists of medications that may cause troubles, what to take to the hospital or the dentist's office, and so forth.
Jen was kind enough to get it started and act as founder, and some of us have put our favorite or most helpful links there. The Member Group is what is new , but it is not exclusively for new members. Everyone is encouraged to use it for reference and add their favorites as well and everyone is encouraged to join. Although you don't need to join to use the site, having more members may get it on the mainboard page where it is easiest for everyone to find it. Until then it can be accessed by clicking "groups" on the bar above.
b.
Jen was kind enough to get it started and act as founder, and some of us have put our favorite or most helpful links there. The Member Group is what is new , but it is not exclusively for new members. Everyone is encouraged to use it for reference and add their favorites as well and everyone is encouraged to join. Although you don't need to join to use the site, having more members may get it on the mainboard page where it is easiest for everyone to find it. Until then it can be accessed by clicking "groups" on the bar above.
b.
Thanks for putting the group together. I am going to go back through it when I have more time.
Amy
Can we add useful tips to this page or would it be better to add other non-medical pages for example: useful tips
for example tips page:
For those who have children, they can make a list of helpful tips.
Travel tips, etc, etc.
Good idea or not?
I think that is a great idea. maybe the best way to handle it so the new group is more like an index and things don't get lost again would be to start a discussion on the main page and then put those links on the member group page, kind of like with the dentist discussion.
For example: on the links member group page there could be a heading of travel tips with links to the discussions we have had about planes and Disney and other older discussions. I think there were some good discussions about caring for children and someone could gather those or start a new discussion and put the link to that discussion in the links group.
if things get crowded, some of us could help Jen paste things back to the main board and just link to it there. It is for convenience because people like me can't always remember where they saw a good idea.
Another tip that came up today are links to ways to taper prednisone and that would be another contribution. There have been discussions about avoiding infections and that would be another good topic for links.
We will just have to feel our way along. So don't be shy. On the member page things can be changed by those willing to be administrators (tell Jen) unlike on the main board where you have to request DS intervention. Although member groups could be started by any one for a particular group those have tended to be much less active and eventually people seem to lose interest.
So it would be good if this were really helpful for us all and everyone finds reason to consult and participate.
b.