[Interested]

Hi, I recently joined this group and am trying to figure out how to navigate this site. My forty year old son was diagnosed with MG in October, 2012 via eye muscle tests, blood tests, and a CT. In December he had a thymectomy and had a thymoma removed. He does not need chemo or radiation, but needs to get a CT every six months for the next five years. He is now on 60 mg of Mestinon three times daily, and 20 mg of Prednisone twice daily. The neurologist said he would probably have to adjust his dosage when he goes to back to see him the end of this week.

His ptosis and double vision have subsided. However, he now has problems chewing, feels like he has rubber bands in his mouth, sometimes has problems getting words out when preaching, and has weakness in his arms and legs. He also notices that he feels like he doesn't have enough air when he tries to sing and can't whistle. I know the neuro doc is still trying to find the proper doses of medicine, but he worries his neurologist may not be agressive enough.

My son has a very busy schedule and doesn't have time to join communities such as this one. Actually, I think he is just too exhausted to do much once he gets home. Consequently, he asked me to check things out for him because I am retired. Since I am also very concerned about his condition and what may lie ahead, we are both hoping that we might find some pearls of wisdom from this site.

Some of his questions include asking people if they could offer advice as to helpful things they wish they would have known when they were first diagnosed, whether there is a special diet that could help, if certain exercises are helpful, and what should he be asking his neurologist, also, are there any tips that would enable him to prevent fatigue.

We never heard of MG before October, but it certainly seems to be a disease that encompasses your entire life. Seems like my son went from thinking his ptosis was allergy related, getting a diagnosis of MG, surgery, oncologist visits, and numerous muscular problems within a few short months. Any advice would be greatly appreciated.

Thanks,
Interested

[Stellatum]

Hi, and welcome. 60 mg. is the standard starting dose for Mestinon. But Mestinon has a very short half-life. If he finds that he feels better after he takes it, but gets weak again before the next dose, he should ask his doctor about taking the pills closer together. That's typically how it's done: you still take 60 mg. pills, but instead of three times a day, you might take them four or five times a day.

Abby

[pingpongman]

It took 2 1/2 years to find what meds work for ME. We all respond differently. I will say that these drugs we take are a danger in themselves. You need to discuss the dangers with your son's neuro. It's a long hard journey and I wish you and your son the best. One piece of advice go into all your sons Dr. appts if he agrees. Four ears are way better than two. I know as a patient I don't hear or understand half of what the Drs say.
Best to you and feel free to ask any questions you have. These are the greatest. I promise you that you will get an answer.
Mike
Get copies of all tests, bloodwork ect.

[4-eyes]

Hi Interested,

Sorry your son is having a tough time. I would, however, suggest that he make the time to learn about the disease and how to manage it himself. There is a learning curve that only he can navigate and saying that he doesn't have time or energy to research the disease that's affecting him is akin to treading on thin ice. MG is the sort of thing that WILL get its way, one way or another.

There is no special diet or formula that will make the symptoms less or prevent the fatigue. You son is recovering from surgery and has MG so it is reasonable that he cannot do what he is used to or would like to do. Sadly, that's the nature of the beast.

We've all had to make life adjustments, and they aren't always pretty, and definitely nothing that any of us wanted or want. It takes time to adapt and to treat the disease. One thing I would question is the twice daily dosage of prednisone. Taking prednisone later than 8 in the morning contributes to insomnia and other side effects and generally isn't done. Your son might want to double check those instructions. Once a day, early morning dosing is the general rule.

Hope this helps, and doesn't sound too harsh. Good luck.

[Interested]

Originally Posted by 4-eyes

Hi Interested,

Sorry your son is having a tough time. I would, however, suggest that he make the time to learn about the disease and how to manage it himself. There is a learning curve that only he can navigate and saying that he doesn't have time or energy to research the disease that's affecting him is akin to treading on thin ice. MG is the sort of thing that WILL get its way, one way or another.

There is no special diet or formula that will make the symptoms less or prevent the fatigue. You son is recovering from surgery and has MG so it is reasonable that he cannot do what he is used to or would like to do. Sadly, that's the nature of the beast.

We've all had to make life adjustments, and they aren't always pretty, and definitely nothing that any of us wanted or want. It takes time to adapt and to treat the disease. One thing I would question is the twice daily dosage of prednisone. Taking prednisone later than 8 in the morning contributes to insomnia and other side effects and generally isn't done. Your son might want to double check those instructions. Once a day, early morning dosing is the general rule.

Hope this helps, and doesn't sound too harsh. Good luck.

Thanks 4 eyes for the prednisone info. Guess I need to clarify that my son does research to learn info about his illness, and just got in touch with someone this morning who was able to share info about a doctor near our area that specializes in MG and sees MG patients daily. We are so thankful for this information. Our son is very active pursuing knowledge about MG. He just doesn't have time to get on the support group sites at this time. Since I do have time and am also interested in learning more, it is easier for me to do this part. In addition, his sweet wife along with his sisters also help look up information. It appears that you can never have too many family members learning about this disease and supporting you and supporting themselves.

[4-eyes]

Oh, thank you for clarifying. That is good that he has the support! The way the first post read made it seem like he might have been ignoring or not dealing with the issues out of denial or something (which would also be perfectly within the "norms" of the adjustment process.)

I hope the new doctor works out for you all! Wish there were easier answers.

[Interested]

Originally Posted by pingpongman

It took 2 1/2 years to find what meds work for ME. We all respond differently. I will say that these drugs we take are a danger in themselves. You need to discuss the dangers with your son's neuro. It's a long hard journey and I wish you and your son the best. One piece of advice go into all your sons Dr. appts if he agrees. Four ears are way better than two. I know as a patient I don't hear or understand half of what the Drs say.
Best to you and feel free to ask any questions you have. These are the greatest. I promise you that you will get an answer.
Mike
Get copies of all tests, bloodwork ect.

Thanks pingpongman for the advice! My husband and son are at the neurologist's office right now. Our daughter inlaw teaches so she can't accompany him. You are certainly correct. Four ears are better than two. Our son also carries a small recorder and records the doctor during visits and during important phone calls. That way we are all informed when we listen to the recorder.

We are so thankful Son was able to talk to someone this morning who told him about a doctor near our area who specializes in MG patients and sees them daily.
Son's surgeon is scheduling an appointment for him with this specific doctor. Seems this doctor is well known for balancing medicines and avoiding the most harmful meds while still helping the patient. Praise God!

Once again, thanks for your response and support.
Interested

[Interested]

Originally Posted by Stellatum

Hi, and welcome. 60 mg. is the standard starting dose for Mestinon. But Mestinon has a very short half-life. If he finds that he feels better after he takes it, but gets weak again before the next dose, he should ask his doctor about taking the pills closer together. That's typically how it's done: you still take 60 mg. pills, but instead of three times a day, you might take them four or five times a day.

Abby

Thanks for your support and response, Abby. Son was informed this morning that a slow release form of Mestinon is also available. This sounds like a great alternative since the patient's body would have a steady supply of the medicine 24/7.

Interested

[Tracy9]

Your son is so fortunate to have such loving and involved parents! What a great mom you are to do this for your son to help him! Just having that family support alone is going to make a huge difference for him in navigating this disease.

First of all, I'm very sorry your son has MG. It's not a pretty disease, and your son is showing signs of it progressing pretty quickly. I'm not going to sugar coat this. There is a lot to learn. If he doesn't take care of himself, he will end up in the hospital in what is called "crisis." Having just been there myself along with a few of my friends in the Facebook groups, it's not a fun time.

I would highly recommend he ask his neuro about IVIG. Some of us call it "MG Crack." It can really help to keep you stable without all the side effects and long term damages from the other drugs. It also works better in most instances.

Time released Mestinon is generally only used at night to help with breathing and swallowing of saliva. It releases inconsistent dosages and people have found it problematic during the day.

The symptoms your son is having are identical to my symptoms. It is critical that he rests when he has trouble with breathing, and when these symptoms are acting up. If he does not, he will likely get worse and end up in the hospital. I can tell you this will be the hardest part for him. I was an extremely active person and therapist, so my job consisted of a lot of talking and maintaining direct eye contact, and holding my head up straight, and writing. All things that are hard for an MGer. I can no longer work. I get too short of breath to converse with someone for a very long period of time. I avoid the phone at all costs, I rarely hold a phone conversation with anyone. I can't read out loud to my four year old. I don't want to scare you, but there is a fine line between not being informed and ending up in trouble.

There is no cure for MG, but there is treatment. The disease tends to progress in the first three years or so. I cannot stress enough how critical rest is, avoiding stress, avoiding heat, and not overdoing it. Those things can kill you. If you get too exhausted, your breathing muscles can quit and then you end up in the ICU on a ventilator if you make it in time.

Your son is on the brink of a very hard journey. His faith in God is what he needs to lean on the most right now. He will need to make adjustments to his work. He may need a microphone when preaching if he doesn't already use one so he doesn't have to exert his voice any more than necessary. He should sit down while preaching if he feels tired or weak! Take breaks when talking, mouth out the songs (that's what I do in church!) Don't schedule meetings or phone calls back to back, those breathing muscles must rest. When he feels short of breath, it's time to stop talking and go silent and rest.

Stay away from foods that are difficult to chew, like meats, grinders, etc. Think, rest the jaw.

Like 4 eyes said, this disease is NOT PRETTY. Your son is facing progressing of the disease. What started as ocular has very quickly become generalized. He needs to act fast and adapt or he will sink faster. Remember there is no cure; having had a thymectomy is pretty aggressive. I can't get my neuro to do one on me because I don't have a thymoma. I would push for IVIG if I were him.

I really can't stress enough that he has to make some fast adaptations or he will end up unable to work. He can't sing. It will exhaust his breathing muscles in no time. Maybe one song per service and that's it. If he has to choose between singing and preaching, what would he choose? If he has to choose between sitting during the service and ending up doing it from a wheelchair a year from now with a headrest, what would he choose?

God bless you and your family. If you are on Facebook there is a great deal of support there as well. There is a group I'm part of called "Myasthenia Gravis Won't Stop Me." I'm so sorry you have to deal with this. None of us enjoy this. If your son would ever like to talk, my email is tracywill9@yahoo.com. I'm a Christian, church is my only socialization, God is my savior, He will get your son through this!

[Interested]

Originally Posted by Tracy9

Your son is so fortunate to have such loving and involved parents! What a great mom you are to do this for your son to help him! Just having that family support alone is going to make a huge difference for him in navigating this disease.

First of all, I'm very sorry your son has MG. It's not a pretty disease, and your son is showing signs of it progressing pretty quickly. I'm not going to sugar coat this. There is a lot to learn. If he doesn't take care of himself, he will end up in the hospital in what is called "crisis." Having just been there myself along with a few of my friends in the Facebook groups, it's not a fun time.

I would highly recommend he ask his neuro about IVIG. Some of us call it "MG Crack." It can really help to keep you stable without all the side effects and long term damages from the other drugs. It also works better in most instances.

Time released Mestinon is generally only used at night to help with breathing and swallowing of saliva. It releases inconsistent dosages and people have found it problematic during the day.

The symptoms your son is having are identical to my symptoms. It is critical that he rests when he has trouble with breathing, and when these symptoms are acting up. If he does not, he will likely get worse and end up in the hospital. I can tell you this will be the hardest part for him. I was an extremely active person and therapist, so my job consisted of a lot of talking and maintaining direct eye contact, and holding my head up straight, and writing. All things that are hard for an MGer. I can no longer work. I get too short of breath to converse with someone for a very long period of time. I avoid the phone at all costs, I rarely hold a phone conversation with anyone. I can't read out loud to my four year old. I don't want to scare you, but there is a fine line between not being informed and ending up in trouble.

There is no cure for MG, but there is treatment. The disease tends to progress in the first three years or so. I cannot stress enough how critical rest is, avoiding stress, avoiding heat, and not overdoing it. Those things can kill you. If you get too exhausted, your breathing muscles can quit and then you end up in the ICU on a ventilator if you make it in time.

Your son is on the brink of a very hard journey. His faith in God is what he needs to lean on the most right now. He will need to make adjustments to his work. He may need a microphone when preaching if he doesn't already use one so he doesn't have to exert his voice any more than necessary. He should sit down while preaching if he feels tired or weak! Take breaks when talking, mouth out the songs (that's what I do in church!) Don't schedule meetings or phone calls back to back, those breathing muscles must rest. When he feels short of breath, it's time to stop talking and go silent and rest.

Stay away from foods that are difficult to chew, like meats, grinders, etc. Think, rest the jaw.

Like 4 eyes said, this disease is NOT PRETTY. Your son is facing progressing of the disease. What started as ocular has very quickly become generalized. He needs to act fast and adapt or he will sink faster. Remember there is no cure; having had a thymectomy is pretty aggressive. I can't get my neuro to do one on me because I don't have a thymoma. I would push for IVIG if I were him.

I really can't stress enough that he has to make some fast adaptations or he will end up unable to work. He can't sing. It will exhaust his breathing muscles in no time. Maybe one song per service and that's it. If he has to choose between singing and preaching, what would he choose? If he has to choose between sitting during the service and ending up doing it from a wheelchair a year from now with a headrest, what would he choose?

God bless you and your family. If you are on Facebook there is a great deal of support there as well. There is a group I'm part of called "Myasthenia Gravis Won't Stop Me." I'm so sorry you have to deal with this. None of us enjoy this. If your son would ever like to talk, my email is tracywill9@yahoo.com. I'm a Christian, church is my only socialization, God is my savior, He will get your son through this!

Tracy9
Thanks for your support, advice, and such a sweet message, Tracy! Although I had never heard of MG until last October, I feel like we have already gained a wealth of information through research and talking to others whom also have MG.

Son is learning new coping strategies. MG doesn't give those afflicted any choice other than slowing down and taking a deep breath when needed. He isn't the senior pastor and doesn't preach all the time. However, Son has been in touch with another pastor with MG. That pastor has had it for about 15 years and has been able to keep preaching several services on Sundays. He was able to give Son some good tips on resting and managing activities. Some of your advice is similar.

You are correct. God will get Son through MG. He will also get you through it! I will keep you in my prayers and ask our family to pray for you also. It certainly is the type of illness nobody wants, but God is still the Great Physician.

I have ordered the book "Attacking Myasthenia Gravis" and am anxiously waiting for its arrival. I have heard good reviews pertaining to this book.

Have a wonderful blessed week!
Interested