Hey guys! My name is Garett and I was diagnosed with MG in February of last year. I was having some double vision in extreme upper gaze, originally they were looking towards MS..but after two clear MRI's, striational antibodies tripling-quadrupling every 3-6 months, and two CT's showing remaniscing thymic tissue...it's safe to say I have MG.

A little about myself: I'm 25 going on 16. I have been married for 6 and 1/2 years, married my high school sweetheart <3. I'm a nurse by trade, but am much happier being a beach bum! I have one son and one on the way. My wife is also a nurse.

I live in one of the hotter places in the US, it was 80 out yesterday..sorry to all you northern people : / but I'm sure you enjoy your cooler summers when it's in the triple digits here. I'm a pretty active person, been slowing down a bit though. I enjoy bicycling, kayaking, and most recently sailing.

One last thing. I'm still in some disbelief that I have MG. I have had a lot of episodes where I feel very weak, but I just attribute it to stress, lack of sleep, or being out of shape. Denial works wonders.

Looking forward to hearing from all of you and having some good talks here.

Hi Garett! Welcome to Neurotalk! You have found the right place! Everyone here is so kind and helpful!

You are so young to have MG! How are you handling it? Your wife? Has your doc talked to you about a thymectomy? Are you on any meds?

I am 34. A mom/wife. I was diagnosed March 6th and had my thymus removed April 22nd. My antibodies were @ 600 when I was admitted to the ICU for a crisis.......not fun!

Denial is easy - especially since everyone waxes/wanes with MG. The most important thing is to not ignore your symptoms and try and get lots of rest!

You sound like such an upbeat and happy person!That is great!

It will get better! You will feel better!

Erin

Hi Garett it must be difercult to listen to your body being such an active young man and its a year with MG sometimes its slow to efect some people and often you don't realize when it with you ..............
so try and rest with out feeling guilty about it and with you both being nurses should help with the support that you will need the worse bit is hot weather for MG !!!!!!!!!!! oh over here in England we have cool snow and most of us got a day off work maybe cos we forgot what snow is
Alan

Hey guys. First off, the meds. I take Mestinon 60mg 1-5 times daily. It's what's really weird about me..90% of the time I couldn't tell I'm weak, I just feel sleepy a lot. I'm not a very facially expressive person to begin with, so I think that helps. I mostly remember to take my meds when I start having trouble swallowing..or if I've been laughing a lot. From my shoulders down I feel pretty normal. I get a lot of muscle twitches though, and my neuro is pretty certain I'm in the process of converting to general MG......At least then maybe I could be looked at for a thymectomy.

I really haven't noticed too much. I have a 2 year old and as such, spend a lot more time at home than being outside doing stuff...as they get older I think is when I'll start having trouble adjusting. So for now, the denial is still working great. I think I'll skip anger. I've always tried to make the best out of the hand I was dealt.

More than anything I can say my wife struggles with it. She gets upset and frustrated when I have to take a lot of breaks for stuff I used to be able to breeze through.

I'll tell you, the most frustrating part of this disease..is that no one knows what it is! That, and my parents. They are both nurses as well...and they are very set in their ways about nothing being wrong with me..so when I complain or discuss it, it's met with hostility. I guess they're not up to it, and I'm not going to force it on them.

Anyhow, ty guys for the welcome and it's nice to talk to some people about this sort of stuff. Sorry I typed a novel..it's a bad habit of mine.

In initially I was tired all the time as well. I really think I had this for years - I mean, years! My hubby was always on me for being "tired" all the time. And I was. Then the other started to go and it was downhill..........Whatever I caught in Belize made it go downhill FAST!

Has your doc talked to you about steroids? THey are a pain, but have made a huge difference for me.........

It is hard on our spouses and family. Some of my family members are still in denial. Or they are really mad at me for getting sick. Or they ignore me. Don't get me wrong, most of them are great, but since so little is known about this goofy disease, they tend to ignore it!

It may take your wife some time to get used to it, but I bet she will. It's just hard.........

How are you feeling today?

Erin

You've been to Belize!? Sorry your trip there had a bad outcome : / I too seem to have gotten worse since being sick. This past november I had a small cold turn into pneumonia..for a long while I felt awful, and since I haven't been doing near as good.

Today I've had a lot of twitches in my arms, face, legs and neck. It's really annoying.

She has talked to me about the steroids..I really, really don't want to take them though. Getting steroid dependent at my age would not be good. My levels continue to go up and up. I think it's something I'll have to look into eventually. That and Imuran.

My problem with my profession is that taking any sort of immunosupressant could be bad. I'm around sick people my entire day and get sick enough as it is..I can't imagine it with a lower immune system.

Again, it was nice to hear from you! I live about 4 hours south of you Erin, in the Rio grande valley. Small world, despite the size of texas, lol.