NeuroTalk Support Groups - Finally it is official!

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Finally it is official! (https://www.neurotalk.org/myasthenia-gravis/137267-finally-official.html)

Finally it is official!

Well, my previous neurologist sent me to a specialist in Memphis & after negative EMG & bloodwork (first EMG was decremental, this one neg, however does that happen?), the SFEMG has demonstrated that I definitely have MG...it was more difficult cuz my presentation differs from most with no bulbar signs yet, all limbic...he wants me to try Mestinon on a different schedule combined with IVIG once a month...today as usual after a long trip I'm really very weak & as others have reported, in a brain "fog", which usually clears up as the day progresses, while the weakness worsens...I realize I should be grateful that I'm as functional as I am, but it still is so frustrating to be forced to "downsize"...I had hoped my retirement would be pleasurable, but "it's not happenin" :(....don't want to give up my horses or my fish, but it's gettin' more difficult to keep up, now I realize why I've lost ground & everything has gotten so overwhelming these past few yrs...typical denial??..I am lucky to have good friends & neighbors to help...

Sorry if my rant makes me seem ungrateful, but I know y'all here understand the frustration.

Hope everyone is coping & doing better..

Dottie

Dottie,

It's Ok to rant... that's what we are here for. As you well know there is plenty of understanding and support on the forum. I'm glad you finally have a diagnosis. Putting a name to a medical problem and a way to treat it will make things a bit more bearable. With the right combination of medication and lifestyle modification you may be able to participate in the things you enjoy only a bit differently.

Stay strong,
Rachel

'Congrats' on getting a dx...bittersweet tho it is.

I know what you mean about the horses. I loved being with my mare, but couldn't take care of her as easily as before MG. Perhaps with your new meds and IVIG it will allow you to do more of the things you used to enjoy. I hope so!