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Originally Posted by AnnieB3
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 thyroid 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 |
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