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.