New to Myasthenia Gravis and Neuro Talk and looking for answers
 

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

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

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.

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.

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.

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

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

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!

Thanks
 

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

I just looked that book up and it is $100 on Amazon. That is out of my budget.

Hi, Interested. Welcome. You've gotten some great responses.

I have to say that if your son had a thymoma, an actual CANCER of the thymus gland, I would seek out a second opinion about the radiation or chemotherapy. Some cancers, once "opened up" and carved out, tend to spread. If even a little bit is leftover, which can be hard to determine, it can grow again.

Your son will need a lot of support from not only a neurologist but a pulmonologist. MG affects the breathing muscles and a pulmonologist is the specialist who can do pulmonary function tests and monitor any worsening of breathing. There are specific tests that look at muscle weakness called MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). I cannot stress enough the importance of having a good pulmonologist.

I echo the concern about your son sounding like he is getting worse. He can't be shy about calling his neuro when that happens! There's no point in having any pride with MG. You can't "tough it out." MG can tank a person very quickly, sending them into an MG crisis.

An MG crisis is where you can't breathe well (in and/or out), swallow well or are generally more weak. At the point of being so weak, he needs to dial 911. EMT's can help someone in an MG exacerbation (an "almost" crisis) and a crisis until they get to the hospital.

A person with MG can also get weak so slowly that they don't realize how bad off they are. After some experience with MG, he will know to check things like his grip, arm strength, ability to take a breath in and out, etc. And he'll get to know when to rest. MG is usually managed with drugs but using common sense and alternating activity with rest/nap/sleep is essential to managing it.

There are things that can make MG worse. There are few places of worship I've been in that are cool enough. Extremes of heat and cold can make MG progressively worse. If there is no AC, then a well-placed fan will help. Infections, lack of sleep, a poor diet, stress, etc. can make MG worse.

There are drugs that can make MG worse too. Have you or your son been to www.myasthenia.org for more information?

I certainly do not mean to offend you or your son by saying this but the only person who can really help your son is your son. He does have to come to terms with the unpredictable nature of MG. You can't "control" it and it has a mind of its own. And I'm glad the other person he knows can manage to give sermons but that does not mean your son will be able to. No, I'm not being pessimistic. It's just that MG is not the same for one person as it is for another. It'll take some time to figure out what he can do. And that can change over time.

I'm glad he got diagnosed and got some treatment. If he gets worse, like is seems as though he is now, he needs to get some more help. No one wants to admit they are getting worse but, with MG, you can't wait for help.

I hope he'll have a good life with MG.

Annie

About him being able to give sermons; I don't preach, but I lecture for a living. I usually can do ok. My voice will sometimes get weak and crack. Taking mestinon helps with that tremendously.

southblues
 

I totally agree $100 is outrageous! However, if you are interested in ordering the book you can order a used book from other sites.
Interested

southblues
 

I am glad mestinon helps you. It seems to be helping son also.

Interested

AnnieB3
 

Annie,
Thanks for your advice. Yes, we have checked www.myasthenia.org[/url] for more information. A thymoma is a cancerous mass that grows on the enlarged thymus. It did not grow on his thyroid gland. When the pathology report came back the surgeon set Son up with two different oncologists. One would have handled the radiation and the other would have handled the chemo. The surgeon and both oncologists consulted each other and agreed that he would not need either radiation or chemo. It appeared all cancer was removed. They did another CT to be used as a comparison. He will have a CT every six months. Were we apprehensive? Yes we were! However, three doctors made this decision together. Are we going to be totally pessimistic? No, we are going to pray and put the matter in the Lord's hands while using common sense and getting a CT scan as told.

Son saw his neurologist a few days ago. He is waiting for his surgeon's office to contact him pertaining to an appointment with a specific doctor that was recommended to him. He has certainly come to terms with the unpredictable nature of MG. Son realizes the importance of rest and knows the consequences. Appears he has learned MG has its own way of making a person rest. He also knows that after surgery some patients tend to get worse for awhile.

His neuro has explained signs of a MG crisis and told him to go to the ER immediately if that happens. He did switch to 180 mg time released Mestinon and it seems to be helping him. I know that some people don't like the time released version. However, as often stated, everyone is different. I talked to him tonight and he said he has done much better yesterday and today.

Something Son has heard repeatedly is that he must take control of his own treatment. He is doing that via research, seeking medical attention, discussing various medicines and treatments with his doctor and consulting other MG patients. His father has accompanied him to doctor visits because Son's wife works. Dad has been surprised at Son's frankness with his doctor. I am certain he will have even more things to discuss during his next visit.

Son is definitely not proud. He knows his life has changed and what lies ahead is unknown. Asthenia means weak and 2 Corinthians 9 says it all when talking about Paul's thorn in his flesh. "But He said to me, My grace (My favor and loving-kindness and mercy) is enough for you [sufficient against any danger and enables you to bear the trouble manfully]; for My strength and power are made perfect (fulfilled and completed) and [a]show themselves most effective in [your] weakness. Therefore, I will all the more gladly glory in my weaknesses and infirmities, that the strength and power of Christ (the Messiah) may rest (yes, may [b]pitch a tent over and dwell) upon me!"

We are a close family and the fact that I joined this site has nothing to do with Son denying his MG, being proud, not helping himself, or not seeking medical attention. I can't even imagine the reason for these thoughts. I realize MG takes over people's lives and life with it is a battle, but I also believe "I can do all things through Christ who strengthens me. Phillipians 4:13."

Appreciate all the help and good intentions of you and all who have taken the time to respond to my posts. It is very thoughtful of you. Please remember Roman 8: 27-29, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." No matter what we face or whatever battle we are fighting, good will come out of it if we put our faith and trust in the Lord.

Thanks,
Interested

Well, I'm not exactly at my best tonight, am I? I did mean thymus, not thyroid, and have corrected my post accordingly. There are many PubMed articles on the thymus growing back and cancer coming back. I hope these doctors will be correct in their prognosis.

Radiating someone every six months is dangerous too, especially if your son goes on immunosuppressants at some point. You might want to do some more research on that. If cancer runs in your family in addition to your son having it, suppressing the immune system could put him at greater risk.

The reasons for these thoughts are multifactorial.

People are human. We all have those moments of pride and if your son is exempt from that, great. But any disease takes time to adjust to and it is quite difficult to go from "I am a healthy adult and can do anything" to "I have a disease that affects every single thing I do every day." The instinct to "push" oneself is normal. I can't think of anyone here who hasn't done that. Cautioning a "newbie" about that is standard procedure around here.

I did not say your son is denying he has MG. How would I know that? I haven't virtually spoken to him.

People who have been newly diagnosed with MG are more susceptible to having an MG crisis, especially within the first year or two. That is simply a fact of MG research. Having knowledge of the "what ifs" is all about being as prepared as possible for anything. It is not saying that your son wouldn't seek out care. It's urging your son to do so. Do you see the difference? It's the same advice I would give anyone on this forum who has been newly diagnosed. It's not personal.

You'd be surprised how many MG patients pooh-pooh their own symptoms and don't seek out help right away. I don't think I'd be generalizing to say that many MGers don't want to admit when they are getting worse, right guys?!

I've had MG my entire life and have had other medical issues. The one thing I do know is that you can't assume anything when it comes to doctoring. And no matter how good you are at coping with things, having a disease is a challenge for anyone.

My post to you was about helping you and your son, as all of my posts on this forum are. And, frankly, I'm surprised that you took it as anything other than that.

Annie

As far as radiating somebody every six months, it is obviously not a great thing, but in the case of a cancer that could come back, diagnostic radiation is worth the risk. Hopefully it will only be several times and not forever.

Before I was diagnosed with MG, I think I had a dozen spiral CT scans of my chest in a year and a half. Every time I had trouble breathing, I'd go to the ER and they would do one to make sure I didn't have a pulmonary embolism. I'm sure I'm practically glowing by now.