Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello,
I'm not sure why I'm writing this but I think I need support and perhaps some advice.
In 2009, my dad was diagnosed with MG. He had a tough road in the beginning (including an MG crisis in 2010 that had him in the hospital on a ventilator for a month) but for the last few years, he's been in remission.
However, in June, he was diagnosed with cancer in his neck (lymph node and saliva gland on the lower left side), a secondary cancer resulting from a skin cancer he's had for years. Doctors believe that part of the reason may have been because of the medication he was taking for his MG which they found out later is known for agitating skin cancer cells. So he stopped taking his MG medication. He's had surgery for the cancer and will be starting radiation treatment in a few weeks.
Last week, he had a blood test to check for the MG antibodies and it seems that his condition is getting worse. As he explained it to me (and I don't know exactly how these things work, so forgive me if I misquote something), his level of antibodies have been 8-10 in his remission but now they are up to 12. He's not having any MG symptoms and the doctor's attitude seems to be that if he's not showing signs, he doesn't need to worry about it yet. My dad asked about finding new meds that might not conflict with the skin cancer (though I understood that this is hard to find) but the doctor kind of shrugged it off and said he shouldn't deal with it now while he's still dealing with the cancer. He told him to just keep an eye on it and if MG symptoms begin to appear, he should come see him and they can deal with it then.
My dad isn't pleased at all about this attitude and I can understand it. I know that MG is fairly rare so not a lot is known about it so maybe this is as much as the doctor can do. But it's making my dad quite worried.
I wish I could help him but I'm not quite sure what to do. My parents live in another country and I can't be with them but I am Skyping with them every week, which seems to comfort them. I feel guilty because when I first heard that he had MG, I was concerned but they made me think that it wasn't life-threatening and "not a big deal" (which I should have suspected, since my parents always do that). They made it seem like it was like having high cholesterol or high blood pressure - you take medications and that's it. And I should have been more interested in researching about it but I didn't.
Tam
I'm not sure why I'm writing this but I think I need support and perhaps some advice.
In 2009, my dad was diagnosed with MG. He had a tough road in the beginning (including an MG crisis in 2010 that had him in the hospital on a ventilator for a month) but for the last few years, he's been in remission.
However, in June, he was diagnosed with cancer in his neck (lymph node and saliva gland on the lower left side), a secondary cancer resulting from a skin cancer he's had for years. Doctors believe that part of the reason may have been because of the medication he was taking for his MG which they found out later is known for agitating skin cancer cells. So he stopped taking his MG medication. He's had surgery for the cancer and will be starting radiation treatment in a few weeks.
Last week, he had a blood test to check for the MG antibodies and it seems that his condition is getting worse. As he explained it to me (and I don't know exactly how these things work, so forgive me if I misquote something), his level of antibodies have been 8-10 in his remission but now they are up to 12. He's not having any MG symptoms and the doctor's attitude seems to be that if he's not showing signs, he doesn't need to worry about it yet. My dad asked about finding new meds that might not conflict with the skin cancer (though I understood that this is hard to find) but the doctor kind of shrugged it off and said he shouldn't deal with it now while he's still dealing with the cancer. He told him to just keep an eye on it and if MG symptoms begin to appear, he should come see him and they can deal with it then.
My dad isn't pleased at all about this attitude and I can understand it. I know that MG is fairly rare so not a lot is known about it so maybe this is as much as the doctor can do. But it's making my dad quite worried.
I wish I could help him but I'm not quite sure what to do. My parents live in another country and I can't be with them but I am Skyping with them every week, which seems to comfort them. I feel guilty because when I first heard that he had MG, I was concerned but they made me think that it wasn't life-threatening and "not a big deal" (which I should have suspected, since my parents always do that). They made it seem like it was like having high cholesterol or high blood pressure - you take medications and that's it. And I should have been more interested in researching about it but I didn't.
Tam
At the first signs of MG symptoms he should contact his doctor for an appointment ASAP. Good luck to him and we will be praying for his quick recovery.
https://www.justice.gov/opa/pr/seller-miracle-mineral-solution-convicted-marketing-toxic-chemical-miracle-cure.
http://www.myasthenia.org/Research/Latestnews.aspx