Hi there! I am very sorry for your sons diagnosis as I know what you are feeling right now is the fear of the what if's. I was recently diagnosed and am struggling for answers myself, but the one thing that gives me strength is knowing we are not alone and that this diagnosis is not a death sentence. There are treatments that work (when we get the right combination) & make sure you are educated when talking to Dr's so you can bring other ideas to the table. MG is not commonly seen, however, my experience so far is that doctors are fascinated by it and seem eager to help find relief. Hang in there and be strong for your son, as the newly diagnosed patient myself I currently am overly emotional and anxious so when those around me are calm and are certain everything will be ok, it helps to calm me. Thanks for sharing and i wish you all the very best!

Hi, and welcome! I'm sorry to hear that you're son is now in this MG club, but thanks for being a good advocate for him; having support makes all the difference!

You have probably heard before that this is the "snowflake disease," meaning that each patient is quite different. But I'll just share my own experience: I started with generalized MG and only got ocular symptoms later, but the ocular issues have been among the trickiest to improve. Steroids have helped my eyes more than mestinon alone. Steroids took about 2 weeks to kick in for me, and I began to see a bit of help then. I'm told that 2 weeks was pretty quick.

With regard to mestinon, 60 mg of mestinon is not all that much, actually, so if he's tolerating the medication well but is not getting a lot of benefit, his neurologist may very well increase that dosage quite a bit. For comparison, I take 90mg 3x/day and a 180 timespan (time-released dosage) at night.

Good luck, and stick around this group. There's a lot of good info here!

Thank you both for your input. I will certainly be checking in all the time and updating my son's progress. I suppose that there are others in his position that may be asking the same questions and may have the same concerns down the road.

Hello - and Welcome!
Very sorry to hear about your son. This is a great group of people here. They have been a great help - to me personally - and to hundreds of MG'ers.
There are also teens in this support group, who are very much on the ball. When they see your post, they will be sure to check in.

My MG also started with ocular symptoms. This first diagnosis - was done by blood-test, by my family physician (primary care physician).
But treatment had to be referred - to a Neurologist.
In turn, that local Neurologist - referred me to another Neurologist in Boston, 120-miles from my home. Many people here, travel much further, in order to be treated by a Neurologist experienced in MG.
I cannot take Mestinon, due to a bad-reaction. I'm in the minority, on that. Other Friends here - can discuss Mestinon with you. It helps many thousands of MG'ers. (Your son's Neurologist may up the dosage - on the 20th.)
Your son sees no improvement - with Mestinon?
That is something to discuss thoroughly - with a Neurologist.

If you would like a recommendation, for a Neuro? Consider posting that, as a separate topic.
Example: "Looking for a Neuro in - (Your Location)".
If possible, people will help you.
SeattleWriter is right: the range of MG symptoms can vary quite a bit, from patient to patient. Don't let that that dismay you. There are more and more answers - all the time.

In the meanwhile? Quality-rest is very important for your son.
Right now? Especially for the eyes.
A break, away from "screen-time" is important.
That will be hard - with a 16-year-old. (Hard at any age.)

You sound very pro-active. That's very much in your favor!
- Ross
Don't hesitate to ask questions, here ... start a new topic anytime.
Also:
At the top of each topic page - there is a search-engine, for past topics. Example: if you type in "Mestinon" (don't use quotes).
You will get a ton - of reading!

Thanks snowbeltfolkie. The eye resting advice is something I have been wanting to ask about. I don't want to tell him to lay off of his "devices" if it won't adversely affect him as I don't want to lose credibility in his mind. He is your average teen when it comes to phones, ipads and computer games, if average is a lot! I will certainly bring it up with the neurologist on the 20th.

So sorry you have to deal with this.
Ross had an excellent point.
I was going to suggest he get the mestinon every 34 hours but Ross's idea is much better.
No reading or tv or computer and see if that helps the eyes.driving is horrible too but he is young so I don't know how much he is driving.

The hardest part about this disease is that it sort of just hangs on. Not like a cold or flu that goes away.
I would guess he is having more symptoms such as general tiredness.
Like the other have said ...we are all different.
I do remember in the beginning waking up every day feeling something new and different. It was weird and scary. Sharing all the weird sensations helped me gain a sense of control and acceptance.
He will most likely need to rest and it may all appear odd to others.
We must never push ourselves. Rest is productive for us.it recharges our battery.
As far as timeframe.....who knows.....rest and mestinon may keep it all under control soon. If rest doesn't get vision under control...could take months. Some of us got worse so it varies. Rest breaks will help to keep this under control. Pushing through it.....definitely does not help...it hurts us. That is why this disease is so wired.

You can tell you son that people in the support group said the blurred vision is from the weakened muscles because he is on computer and reading or tv. He is over using his eyes.
He needs to do what ever he can to get his vision back to normal and then add screen time.
This is serious business.

It will adversely effect him....it will continue to get worse.

Thanks AnnKempt. Well, I just told him and that didn't go over well at all, but he did put them down. Hopefully, he see's improvement soon and will chalk it up to this conversation.

I hope so.
This isn't going to be easy.
I remember feeling like I was a cat in a room full of rockers. This is very scary.
There were days I had to sit in my room in the dark because my eyes couldn't handle to stimulation of outside.
I don't want to scare you but this is the truth. He needs to rest his eyes till his vision is ok.
Music and headphones with eyes shut will help.

I hope so.
This isn't going to be easy.
I remember feeling like I was a cat in a room full of rockers. This is very scary.
There were days I had to sit in my room in the dark because my eyes couldn't handle to stimulation of outside.
I don't want to scare you but this is the truth. He needs to rest his eyes till his vision is ok.
Music and headphones with eyes shut will help.

I'm sorry you have the need to find us; you are among friends here.

This is a journey that requires many navigators because each experience is so different. You will find great advice, useful experiences, and a chasm of kindness and support.

My symptoms are mostly generalized with ptosis only when I have pushed myself too hard. Learning to manage my energy is the most difficult for me. I can only imagine a teenage boy would fee invincible, so, as others have suggested, try to find ways to encourage him to rest so he has the strength to perform other activities that are more important to him.

I hope you find the right cocktail of treatment soon.

Hi All, been a while since I checked in.
sgt3106, I have just OMG, Hopefully your son does not progress to GMG. I just updated my profile which pretty much sums my story, may me of some help to you. All the best.

So sorry to read of your son's diagnosis, but welcome to the group. My first symptom was double vision, within a month it had spread to facial and neck muscles. However, other folks have had it take years to spread, and for some it never spreads. Best of luck. Please keep us updated.

Hello and welcome to DS. I'm so sorry to hear that your son has been diagnosed with MG. I am happy that you are able to advocate for your son as this disease is neither easy or straight forward. I always tell the newcomers to keep a journal. He should write down his symptoms and how he feels on the mestinon, what time he takes his doses and his activity. Writing it down for the doctor to see will help you make your case or justify requests for everything from an increase in meds or a given treatment, etc.

With regard to generalizing MG it will develop in more than 50% of patients who present with ocular MG, typically within 2 years. Every year beyond the 2 year mark lessens the likelihood of generalizing but given the variability in this disease you can't take anything for granted. With regard to steroids, I found the following information very interesting. At 2 years, prednisone treatment appears to reduce the incidence of generalized MG to 7% in contrast to 36% of patients who did not receive prednisone. Many people find remission if steroids are started soon after diagnosis and is largely dependent on the dose given and how early after the first manifestations of symptoms.

For many, the blurry and double vision is something that we live with in some fashion or another. I still have the blurry/double vision and I have to work around it. Frequent rests for his eyes is important and sometimes he may need to use an eye patch to rest one eye at a time. Rest is important for us snowflakes as you may have read.

I would also recommend that you obtain copies of all of his test results including blood, EMG, CT scan, etc. Whenever possible it is best to get a copy of his progress notes from each appointment that he has because unfortunately, not all doctors are good at including other providers. It is very important that all providers to be on the same page.

I hope that your son is doing okay. Please keep us posted on his progress and results. You will never be able to completely understand what your son is going through but you can be supportive, loving and understanding. It's really difficult for adults to get our family members to really understand what we go through and unfortunately, many family members just have no desire to learn. There is a story called "Pocket Full of Nickles" which I find to be one of the best descriptions of what we go through each day. If you type in that title in the search it should come up right away.

Your son is at a very rough age for a diagnosis like MG... well, for any diagnosis really but specifically MG. He is going to be angry and rebellious because that is the nature of a 16 yr old. He may have to learn the hard way but I sincerely hope that he heeds our warnings. We've been there and we know all too well the consequences of over doing it (even if he only has ocular at this time).

Good luck to you and your son. Please let us know what you find out on the 20th. Hugs to you, your son and the rest of your family.
Aloha,
Angie