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.

Yep. I went to Belize! My hubby was able to get the whole trip on barter, so we sayed @ the most beautiful place www.aprivateisland.com and it was amazing! What wasn't so amazing was how sick I became once we returned.

My docs still have no idea what I caught - it still says "unspecified disease of the lung" on my chart. On the positive side, I do see my new pulm in a few weeks and am getting another scan with contrast - just to make sure my lungs are OK. Actually, I have great lungs - which is shocking since I smoked most of my life, but that's another story......

Mestinon can make you twitch. Did you know that? I had no idea until a few weeks ago.

Serious illness can really mess with MG. Really mess with it.

I know roids are awful. I know they are. But they can really improve your quality of life. Before them, I wasn't even able to get out of bed or walk unaided. Granted, I was really sick, but for me they have been a real blessing/curse. I'm still @ 60 and it has been crazy, but I am so thankful that I can take them. Don't get me wrong, they have caused wild mood swings, acne, weight gain, all of it, but I am just so thankful to BE HERE that I 'll take that any day - OK - most days!

Imuran has been pretty great as well. I take so many pills that I feel like a walking pharmacy, but I realize that this is what I have to do until I go into remission - something I pray for every day and night!

So, you live here, too? I just love Texas! We have a place down by Huntsville that I would gladly move to, but it's just too darn hot there! Plus my hubby has 2 children here and we just can't move until they are ready for college - 2.5 yrs to go!

Does the heat affect your MG? I've noticed that I wilt when it is hot! And my face blows up to twice it's size!!!!!!! Not a sexy look!

It was great hearing from you! I'd love to hear how you are and how your family is!

Hang in there!
Erin

I had read that about mestinon, and brought that up with my Doc, but she feels that since I'm taking such a low dose(per weight), it's unlikely that is what's causing the twitches. She thinks it's more from weakness. Who knows though, ya know?

I dunno about the heat. I'm weird. I can get out and paddle on a kayak for 2-3 hours in the heat and not get too bad(albeit I do take mestinon before i hop out there)..but even without meds I do OK most of the time.

That's the denial issue. I really don't notice feeling weaker. I guess I needed a good baseline. I get a little tired here and there with my arms..and my tongue if I'm having to talk a lot. Around my eyes and my mouth/jaw..but I never paid any attention to this stuff before, I feel like I'm looking too into it now! I don't have any really noticable symptoms either..except for my eye, but it's that way when I wake up in the morning and doesn't get any better with meds. Today I haven't taken anything and I feel fine, still getting twitches here and there, but otherwise not weak/tired one bit...

Ugh, it's frustrating. But for now it works. I love Tx. Been here my whole life. I would love to move up near SA, in the hill country somewhere. Maybe a little later in life I can do that :P Steroids sound like NO FUN. I really think I'd have to be bad to start taking them. It's nice that they're helping you though.

How do you do with your kids? About how old are they? I worry a lot about that, I've read how MG can kinda progress and make you weak all the time..I can't imagine that with my little buddy. Not being able to toss him around the house would be awful : /

WEll, I think it is great that you are still so active! I love kayaking! I tried it in Belize and had a blast! The water was so still and calm, but those goofy "sea lice" got a hold of me and my hubby - yuck!

If there is any way to stay off the 'roids, I would certainly do so! I really, really, really would prefer to not be on them, but by the time I was diagnosed I was waaaaaaaaaaay sick and needed something that minute, so my doc started me @ 10 mgs a day and doubled it until I was up to 80 mgs - in 8 days no less! I was waaaay big!

Today was my fourth day of IV IG and I feel pretty good. Since my diagnosis I've been in and out of the hospital quite a bit, but I guess I need it! THe nurses @ the Methodist are AMAZING! As soon as I'm in remission, I'm gonna volunteer there ~ they have really been kind to me. I've been very blessed!

My son is 16 and is the love of my life! He has been my rock - although it should be the other way around........I keep telling him that I should take care of him, not the other way around........but he does worry........

My hubby has been great as well! In that respect, I have been very blessed. All of the nurses have a crush on him. They have told me that they have never seen such a supportive hubby.

Denial happens. It happens all the time. Just don;t wear yourself down @ all. You need to keep up your strength. It will get better.

I was recently told that back in the 60's, MG was really, really bad. I mean really bad. It was kind of a death sentence. Recent medical advances have made it possible to live a normal life. You can look forward to a normal life.

You and your son and wife (and one on the way) will have a wonderful life! It will get better! The great thing is you were diagnosed before you got too sick!

After my last dose of IVIG, I was able to decorate my entire home and put up my xmas tree - in one day! Last year, I wasn't even able to do anything - just lie around and feel sorry for myself. Granted, I overdid it, but I didn't care! It was worth it to see my families smiling faces

We were also able to have a xmas party for my hubby's clients - he's in real estate and that was great as well. After that, though, I got sick again and needed the plasma exchange.

Speaking of plasma exchange, my neuro does have some patients that only get the IV IG or the exchange - no other meds (except Mestinon). You may want to ask about that......... Since you are a nurse, you need all the immune system you can get! I don't know how you do it. It must be so hard! Being around sick people all day must be very trying.

The Hill Country is beautiful! I've got the moving bug again and am hoping to get a garden home. Since I am married to a realtor, we can get some really good deals......I dunno.............


Erin