Welcome to our DS family. I have tried other sites but this site has the most caring and compassionate people you would want to get advice from. Just to give you a little background. I am a 46 year old mother of two. My youngest is my son who is 17 and my daughter is 23. I can't even imagine telling my son he has MG and how it's going to change his life. I was diagnosed February 2013 so I am still in the learning process. I spend several evenings a week on this site and others to learn as much as I can about MG. I am more generalized than ocular but my eyes are starting to bother me more and more. The key is a good neuro. Mine is great. She is willing to let me have a say in my treatment. Since we all respond differently to medications we often have options when planning our treatment. My dr lets me in on the choices and we decide together.

Unfortunately for your son resting your eyes and your body is the best thing for you. I wish I could answer your questions but my MG showed its self in a weird way. I had slight vision problems about a year before the general started. I started tripping over things, falling, and I was always exhausted. I can tell you my GMG progressed quickly. I take 60mg of mestinon every three hours. You might call the dr to see if your son's dosage can be increased. Mestinon doesn't remove all the symptoms but it helps. For me steroids helped after about 2-3 weeks.

There is a lot of waiting with this disease. Waiting for tests...waiting for results, and even waiting for medications to take effect. I know others have said this but you have to be his advocate. Ask questions and do your research.

Sorry for rambling on. Ask all the questions you want. Someone here will do their best to answer them.
Michele

Thanks to all for your words of encouragement. Can someone answer this for me please. About a year ago we joined a gym together. Having been a fitness lover my whole life, I was very proud and happy that he seems to have the same passion for it that I do. He still wants to go to the gym with me during the week, but am I hurting him by doing this with him?

More questions: has anyone here ever tried the hyperbaric oxygen chamber? Has anyone gone vegetarian or vegan? Curious to hear if either helped.

The gym....
Most likely won't help at this point.....and I think it could hurt.
He won't feel it at the time.....but after it could exhaust him.
Swim may be ok but .....at least that is how I see it.
I wasn't able to swim or exercise for years after my onset. Maybe you could walk together first and see how that goes. Repetitive moment such as weight lifting would use up energy he may need to do daily activities. But you two obviously can assess.
Just don't over do. We can be active....then wam....down we go big time.
As a parent.....you may want to hide your going to the gym.
I can't believe I am saying this....but can you even imagine how hard it would be for you .....to have that end.
I would love it if I am wrong on this one.

As far as diet
I do better on healthy diet.
Maybe don't have to do vegan.....but definitely don't keep junk food around.
If anything....if he has to go on the drugs many of us have to go on....he won't need salt or fatty foods.
Thinking about you and your son. This is tough....just remember....what he says about his body is true. We get all kinds of crazy feelings. Just listen and understand. That will be his best gift from you.
And when ever he has to stop being active.....give him the break he needs.
Pushing through this only makes us worse. Rest is productive. He may appear lazy. We feel very lazy and it is very difficult to be like that.
Ann

with regard to your question about vegetarianism, I've been both vegetarian and vegan, and I'm experimenting with eating small amounts of meat now (I can't really swallow it that well, though). No diets I've been on have made a change in my case, though, of course, eating a very healthy diet is always a good idea!

I understand your "hide the gym" comment. Truth be told we are a huge hockey family. Son and daughter play, I still play, and have been for some 47 years. My son is a very good player and plays on his HS team. I have vowed to not step on the ice again until we do it together. That may sound silly to some but my whole being is devoted to his getting well and I believe it a bit selfish to do something he cannot at this time. My daughter is also a very good player and will continue playing, but now she says she plays with a purpose. She plays for those that cannot. Pretty wise for a 13 year old.

Hi and welcome as I just joined myself. Im sorry to hear of your sons diagnosis as I remember how I felt 14 years ago when I learned of status.

One of the most important findings is to getting the proper diagnosis and than getting the proper treatments , including medications. It took my Docs quite a while to finally pinpoint it to be Mg and I remember saying to myself , what is that ? I refer it to the "unknown disease "

Be there and be strong for your son as although MG isn't curable it it is without a doubt controllable as i and many others will say the same.

This is my first response and hope you find it somewhat helpful .After so many years of doing this alone I rally think I've found a wonderful group where I can not only help others but also get support.

Good Luck and look forward to talking again.

Welcome to DS, everyone here in the MG group are nice and helpful! I am 17 and new here. I haven't been diagnosed with MG but it's suspected I have it. I have generalized symptoms.
Make sure your son gets a lot of rest. Going to the gym doesn't help much when you're in a flare. I learned that the hard way.

I hope he gets better soon and his medications work for him. Have him pop in and say hi when he's feeling better!

Good Luck,
Bri

Hi Im annie. im so sorry to hear about your son. I just turned 17 but I was diagnosed when I was 16 with general MG. I went almost immediately into a flare so I had to cut down on my physical activity. but prior to MG I was a three season athlete at my high school and was always out and about. A lot of people are saying that the gym could hurt him but I think its worth a shot. its important to maintain the muscle you have and stick as closely as possible to his current exercise schedule. If its too much then he can always cut back but exercise will not only maintain his muscle mass but its also important for feeling normal. i remember crying the day i was finally well enough to play a simple game of pass with a soccer ball with my brother because sports had been such a big part of my life that it was so good emotionally for me to be able to do something with my body. If exercise and going to the gym can give him any feelings of normalcy then i would go for it.

Also as far as diet goes, i am gluten free. it has helped a bit to relieve my symptoms but more importantly it forced me to cut out a lot of processed foods. the way i see it, if cutting out gluten improves my overall health then its worth it.
i also found this website called "eat to beat myasthenia gravis" that had a ton of info on clean eating, diets for people with auto immune diseases, and info on the benefits of specific foods. its definitely worth a glance.
I wish you the best and if your son ever needs someone his age to talk to, im here!
Annie

Annie, wow. You seem like an incredible young woman. Thank you for the help. I think it would be most helpful if he could speak/chat with you. He too is a good athlete and plays for his HS.
Today we were given the prednisone prescription and we start tomorrow morning. Starting with 5mg daily.
Also, we got the results back from CT scan and the thymus is normal, so no surgery. The Dr. was confident she could get him under control and we left the office hopeful. Kurt smiled himself and believes that one day soon he will have his "old life back" as he termed it.
Diet will be modified. High protein low carb, low sodium.

I am so happy for your son.
I love this group.
Annie speaks for a place that is so much more like your son's.
Isn't this wonderful.

My diet has changed significantly but found it was a natural process as I just could not stand eating things that felt like a labour of chewing. I think this helped me tremendously, particularly in terms of mood, as mood is something that is very difficult to deal with in the early days.

Had the worse double vision, horrific. Could not even be a passenger in a car without freaking out. I had to wear an eye patch to alleviate the dv. The only thing that fixed it was the IVIG. Oh my,how happy was I when that worked - fairly instantenous.

Mestinon took awhile to kick in for me but I was in a really bad way. But happy to say, I am fairly much back in the driver's seat of my life.

I hope your son gets the best treatment and quick return to managed health.

I'm Sorry To Hear About Your Son. I Was Diagnosed With MG When I Was 14 & I Have To Let You Know.. Things Get Better No Matter How Bad They Seem. Have Faith That God Will Make A Way Out Nowhere Just Keep Your Faith Strong. For About 2 Years With My Disease I Had To Be Homeschooled Since I Was In The Hospital Every 6 To 8 Weeks In The ICU. Things Got Better After I Had My Surgery I Went Into Remission I Graduated From High School With A 4.0 15 Scholarships & 2 Acception Letter To 2 Universities. I Will Pray For Your Son & Your Family

Sorry to hear your son has this dreadful disease. Vision issues are
par for the course. Rest is really key along with taking the prescribed medicine. You may have to work out dosages with the dr. until you find the right amount-and that can change over time-again.

Stress, heat, and being sick all really make MG so much worse.
Keep that in mind as you plan out your time. Don't visit with friends who are sick or have been sick recently. Don't hang outside when it's humid/hot, and keep stress as minimal as possible.

I've been on just mestinon so far, but a lot of folks respond well to steroids and other immunosuppressant drugs. I pray you find the right medicine for your dear boy.
HUGS!
Carly