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...

1,709 Members

7,414 Posts

0 Online

mgadvocate 07/29/2013

Myasthenia Gravis Foundation of America, Inc came out today with the online MG Patient Registry. The web link is;

https://mgregistry.soph.uab.edu/MGRegistry/SignUp.aspx

When you open the web site you are provided terms and conditions, that define the scope of the program.

Hopefully this very first MG patient registry will prove to lead to better research, diagnosis and treatment.

Bruce

txkiki53 07/29/2013

I started filling mine out until my eyes got tired,... Will have to do it in steps.
Annette

snowbeltfolkie 07/29/2013

Thank you, Bruce!
- Ross

ahpotts72 07/30/2013

Completed mine. Thank you for the link. Thanks for sharing it.

Aloha - Angie

newmugg 07/30/2013

Bumping this back up to the top. Thanks to our Jenn for all of her hard work!

Barbel 07/30/2013

I think this is great! Thanks for sharing. Barbel

Barbel 07/30/2013

I also think that researchers would learn a lot if they would read our posts and conversations here on DS.

mgadvocate 07/30/2013

Barbel,

I agree with your comment.

I wish the MG Registry would have included questions concerning non or misdiagnosis. A focus should have been made for the seronegative MG patients.

However, the registry is at least a good start. Maybe we as a group can help submit our ideas to improve upon the registry.

Bruce

deleted_user 07/30/2013

Thanks for sharing this, Bruce, and thanks to those who have registered or are in the process of registering. :)

One comment - please keep in mind that this is just the beginning with the patient registry. Additional questionnaires will be sent periodically to those who participate to obtain additional and updated information. Shoot me a message if you have specific comments or suggestions to improve the registry and I'll try to pass them on to the right people...

In the meantime, PLEASE PLEASE PLEASE help spread the word about the registry!! :)

bweeds 07/30/2013

Jen,
There is a place for comments at the end. Will that be picked up or should we send them to you (or both)? I suggested having questions about GI symptoms other than choking for example and how many years searched for answers regarding weakness and how many neurologists seen.
Thanks for all your hard work.
b

deleted_user 07/30/2013

leaving it in the comments section when filling out the form is probably best, although people are more than welcome to send them to me, too. :)

revelationman1911 07/30/2013

GOOD ONE ,,THANKS

Barbel 08/10/2013

I finally got my MG Registry completed. It took three visits to the site because I had to look up information or ask my neuro about test results, or i didn't have the energy to do it. Let's keep bumping this up. Maybe they will find something in theresearch that will help all of us! Have a good day. Think happy thoughts.

deleted_user 09/11/2013

Completed mine! Thank you

Joe-Fodor 09/18/2013

Just started this and wanted to bump this thread up in case any fellow MGers want to register. It's fairly detailed and I will need to dig up my old medical records to fill it out completely. Took about 20 minutes (so far). I don't know the month my grandfather was born in!
~Joe

ferd1942 09/20/2013

http://www.dailystrength.org/c/Myasthenia_Gravis/forum/17205209-mg-patient-registry

Join the Conversation