Hi
Sorry to hear about your son, but it sounds like your doc is on the right track. Give the cellcept some time, I was on it for almost 9 months before I noticed improvement. Try covering 1 eye, the double vision should go away. You didn't mention if he was also taking mestinon, it may help the double vision or it may not. Couldn't hurt to ask your doc about it. Just hang in there, it seems almost everything with MG takes time. Hope this helps you.
Terry in PA

Yes. I forgot to mention he takes 90 mg of Mestinon every four hours. I am hoping to have this under control by the start of school in the fall, but the way things are going, it seems doubtful. What a life changer this has been for an active young man. So difficult to watch as a parent.

What about mestinon? I hope he is on mestinon.
Is he on computer and iiphone all the time. If he is that would definitely cause double vision.that would mean his eye muscles are being over worked.
He needs to rest his eyes.
There was a time I had to sit in my room in darkness.
Double vision is symptom of mg worsening but if he is over using his eyes his eye muscles are weak.
I wish this was the problem because if it is you will see much improvement when he rests his eyes. Also tv is tiring on muscle too. Unfortunately reading is too. Listening to books or movies would be best for double vision.

Just to give you an idea as to how much life can impact vision.....just riding in a car would be too much stimulation for my eyes many many times. Driving over an hour is impossible even after treatment. Rest is our best friend.

Treatment takes a while to work. I remember when they told me a year to see improvement and it sounded like forever. One year later I was ble to resume many activities. This will get better....

Hi there, I am at a similar point as your son and dont have advice but I will tell you this, there were times when i would have preferred to be blind vs the "wonky" vision I had at the time, it would come and go. Over time i am learning that although I get frustrated when I get a "new" symptom, the good news is that it seems to change. My vision is now, for the most part a non-issue but I have some other, less annoying and debilitating, issues. EVERYONE has told me i need to be patient, which i am not, as i am sure your son is, but I do see changes and he will too,... keep the faith.. better days are coming...

Hi there so sorry to hear about your son..We all know how hard it is....I started with the prednisone and mestinon and eyes did get better for me within about 6 months....Still have some problems at times with double vision and blurriness but MUCH better..So be patient..Mg is a roller coaster ride and everyone is different but I agree you are on right path and this to shall pass for him..I am off mestinon now because couldnt take side affects so just doing the prednisone which probably I always will, hate the side affects of that also, they now seem to be getting worse but has helped the vision so gotta press on....But heres hoping your sons vision improves quickly and all goes well.....Hugs

Thanks for your replies. He spends a lot of time on his xbox because he can socialize with friends without them seeing his eyes. He had just gotten his driver's license when this came on. I guess the best thing to do is get him out doing things that don't strain his eyes. Hard to do when his interests involve sports - hockey, golf, weightlifting. What a horrible thing to happen to a 16-year-old. I try to stay positive, but I fail miserably. Best wishes to all of you suffering from this terrible disease that I had never even heard of until March.

Horrible
I am so sorry for you and your family. If he needs to rest it is normal.
I remember feeling tied to the couch. Rest is productive. It usually never helps me if I push myself. It just makes me worse. That is the weirdest part of this disease.rest is productive. My heart goes out to you.

Ps
Video games definitely will not help double vision. I bet if he stops xbox for a week....his vision will improve. Only makes things worse .

I would say golf and a cart would be his best bet.

Hello,
Welcome. I am sorry that your son has to learn to live a new kind of life. Yet, I believe that because of his age the doctors will get the best treatment to let him live a full and happy life.
Get a Neurologist that has specializes in MG if possible> Most large city's in US will have at least one and most will have several.
Please don't lose hope. It is early. Looking forward to having things get back to a more normal time.
You now have hundreds of new friends to cheer and pray for you and your son.
I promise, it will get better!

Hi, I have just ocular MG. Take 25MG prednisone, the lowest dose I can get down to get by. Still have many bad flare ups, and working on computer screen all day doesn't help my situation. The best advise I ever got was to use scotch tape on one side of eye glasses, can then get by on one eye and still have peripheral vision(vs. eye patch).

The neuro this afternoon has ordered IVIG treatments. If those don't resolve the eye issues, he will have a thymectomy. I only have hope left. I have prayed to everything I can pray to and I've cried everyday since the diagnosis. His neuro has been treating mg patients for over 40 years, so I have faith she knows what she is doing. Funny how life changes in an instant. I can hardly remember a normal day. I just wish it were me instead of him.

I do know resting the eyes will help his vision.
No matter what treatment he will need to rest eyes if he wants to fix that.