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.

Djuna

I think I remember reading here that there is no correlation between the levels of antibodies and the severity of symptoms. In other words, someone might have relatively low levels of antibodies and severe symptoms, or high levels and mild symptoms. Can anyone confirm that?

Djuna

Good morning. I have been told, repeatedly, by two MG specialists, that there is absolutely no correlation between the numeric value of a positive antibody test and the severity of the disease. I am an example of that...my initial results were abnormally high, went down somewhat after my trans sternal thymectomy, and 3 years later my numbers have quadrupled. But, my symptoms went away 2-3 weeks after my thymectomy and are still absent. Hope this helps.

Lisa

I can imagine you both are worried and confused. It is indeed possible some medication prescribed for MG (especially imuran = azathioprine), causes some forms of cancer. This is mostly only in people who take a high dosage and for a long time, and for people with MG (who normally don't take the highest dosage) the risk isn't that big so the benefit is (most of the time) greater than the risk.

About the antibodies, I can only speak for myself. Unfortunately I haven't have them tested more so I can't make a perfectly good conclusion. But I'll tell you this: my antibodies started really high, but my symptoms were "annoying but manageable" though I had breathing and swallowing issues, I was still able to do things and walk around town a bit. After a few years and many, many suppressing drugs later, my antibodies were lower, though my symptoms much worse. So, no correlation there. For my anyway.

I understand the doctor's thoughts. Why bother with medication for a disease that doesn't show itself? If he's having mild problems he could take mestinon, but all the other medication is just no fun. Like prednisone or something, he's probably already having a hard time as it is.
It's best to really listen to his body, any weakness showing = call doctor.
I do understand your worries about quitting the medication and not starting anything else. I would be scared too. A lot of "what if's" come to mind. Maybe he'll be just fine. And maybe the MG symptoms will get back, but no one can really predict that.
I really hope it just stays away.

If he' starting treatments for his cancer, please keep in mind a lot of drugs are (mildly) contra indicated for people with MG. Even stuff you'll get if you get a CT scan can cause problems for people with MG, so keep that in mind. Not to scare you, but it's best to know and always ask them what it is they give to you (not only pills but anything). Maybe a list of drugs to avoid is a good thing to have.

Don't feel guilty about not thinking too much of it in the beginning. It's a very difficult disease for family too.

Can we safely assume your dads doc is his primary doc. You might suggest he see a actual neurologist. I would suggest your dad tell the doctors no matter what it is (I.e. cancer, e.r, or etc) just to be on the safe side especially if he's had a crisis

This is what we were told by our neurologist as well....no correlation.