New to this... That dang MG!
 

Hey my name is Jacob just saying hello. I've had MG for four years and had a thyamectomy around the time I was diagnosed, which really hasn't helped my symptoms. I was diagnosed at age 21, so I'm young for MG. My symptoms affect my speech (noone can understand me usually lol), chewing, swallowing, walking and balance, overall fatigue, and that great double vision! gotta love that sideways eye. I've been hospitalized twice a few years ago for crisis where I stopped breathing. So my symptoms have been getting worse as of late, not crisis bad, but not good. I've been getting IvIg for about a year and a half every other week, which had been maintaining my symptoms at a managable level. Now my doctor is starting me on plasmapherisis instead of the IvIg. I'm going tomarrow morning to get the port or cath set, not sure where or what they are putting in me but I'm game. Had the pherisis a couple of times before the thyamectomy, and it helped alot, so maybe getting it every other week is the key. Just don't want any port or anything so I'm bummed out. so yup thats me.

Welcome to NeuroTalk.
 

Hello, Jacob. You certainly seem very young for all this. My dad was 35 when he was diagnosed. That was 65 yrs ago--before they could do a whole lot more than diagnose.

I'd hate a port in me, so I can certainly get where you're coming from there. Let's pray it's worth it. They know so much now & I hope that works in your favor. As young as you are, maybe they'll come up with some sort of genetic or stem cell approach that will make a significant difference.

Pie in the sky? I don't think so. Science is moving at ever faster speeds these days.

Here's the link to the MG forum:
http://neurotalk.psychcentral.com/forum77.html

Best to you, Jacob. Hop on over & introduce yourself there too. Take care.

Nice to meet you!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here, just let us know how we can assist, you see we are are supportive and relaxing place to be. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug: