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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bweeds
bweeds
Since we have so many new people on the site, I thought I would post this link which is a good overview of MG.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2211463/#__sec21

The muscular dystrophy site and the myasthenia gravis foundation site are also very good places to find both general information and reports of ongoing research.

myasthenia.org has a publication entitled handbook for professionals which has lots of good information and sections you can keep with you in case of ER and dental visits. There is also the publication regarding medications and myasthenia (as in drugs that may cause worsening of symptoms). Dr. Gil Wolfe's talk at the 2010 MGFA conference is a good review of treatment options.

There are other sites that have been mentioned, maybe we could collect some of them on this thread and make them easier to find, such as the ones about open and ongoing studies and the one to which Sherry and Cathi subscribe.

And, of course, there is this site. Welcome.
bweeds
bweeds
Links for congenital (genetic) myasthenia
Possible reason for seronegative myasthenia

http://www.ncbi.nlm.nih.gov/books/NBK1168/
http://www.mda.org/publications/fa-mg.html
http://myasthenickids.org/LinkClick.aspx?fileticket=STlpS4ni5-Q%3d&tabid=39

b.
deleted_user
deleted_user
Great idea, although I thought you were writing about MG and golf.
bweeds
bweeds
Although golf is not my game, I could wish us all so well that we could get out there and hit a few without falling down or needing a cart. Of course, it might not require MG to put me on the ground when trying to swing a club! I might have had better luck with it, though, than trying to play basketball at 5'2" with symptoms of myasthenia. b.
newmugg
newmugg
New Pilot Study at St Louis Univ., Vanderbilt and UTSW

http://www.healthcanal.com/brain-nerves/23556-Researchers-Try-New-Approach-Manage-Myasthenia-Gravis.html
cgreens
cgreens
That first link you have regarding MG is a great summary of what is known and has the links to the references cited in it also.

Thanks B!

TJ
catladyme2
catladyme2
Great idea b.
bweeds
bweeds
I am bumping this up again for the new folks and to be sure those wondering about congenital myasthenia and Lambert Eaton have the myasthenickids one.

Once again, Marvin, sorry this isn't about golf.
b.
deleted_user
deleted_user
Great links especially the first one.
newmugg
newmugg
Just saw this. I'm not sure if there are any LES on here but thought I should post it:

http://quest.mda.org/news/biomarin-seeking-us-approval-lems-drug

This drug has been aprroved in Europe
cgreens
cgreens
Product recall website.

http://www.fda.gov/Safety/Recalls/default.htm
deleted_user
deleted_user
I put this is another message but www.greenmedinfo.com has information about research ith alternative supplements along with phsrmaceuticals. There is a membership but one can get loads of info for free without it.

www.greenmedinfo.com
bweeds
bweeds
Bumping this up again for new people and any new thoughts and links. Larrissam, I think the first link will help a lot to introduce you to MG and treatment. Good luck, getting diagnosed is the step and sometimes the hardest and most frustrating. b.
Kimber71
Kimber71
Has anyone ever sent the admins a note asking if they have the ability to make something like this a "sticky" so it stays at the top?
cgreens
cgreens
Plenty of Stuff to go through here and it pertains to MANY subjects in relation to MG including trials, treatment, coping, management, tutorial in spanish, home injury prevent etc etc etc etc...

http://www.nlm.nih.gov/medlineplus/myastheniagravis.html
deleted_user
deleted_user
Yes, I've been to most of these sites and many more. Been working on my list and still bewildered. When did it start and mostly why? What type? Will it interfear in my busy and active life more than it does now?
Anyway, everyone has been so resourceful and friendly.
I decided to start with my local doctor as he prescribes my meds of which one is a beta blocker. I will ask for a neuro referral.
I live in a very small town in Colorado and good specialist resources are many miles away. I guess testing is the only way some of these questions can be answered and maybe some cannot be answered. I will continue to forge foward.