Congratulations on somewhat of a diagnosis! That's more than the vast majority of us get. I'm glad someone's making some progress. A week ago I had an appointment with my neuro. I brought up the VGKC question. It didn't turn out as I had hoped. Here's what went down.
I asked whether it was worth having a VGKC test. His response was, "There's no test." Now, I don't know if he meant there's not a good test, or whether he really thought there was no test at all. If he didn't know there was a test, and here I was telling him that there was, that may have caused him to be defensive. Not a smart thing for a patient to do I guess. (Also, he had been up all night and had really wanted to cancel his appointments and go home sick, but he didn't. He should have.) In any case, it went downhill from there. I went on to say "I know there's not a good test, but is the test that is available worth having?" His response: "What do you want to do, go on Prednisone? Do you want to do that to your immune system?" I responded that no, I didn't think my symptoms warranted that. I can only assume that he was thinking that the only purpose for taking such a test would be to decide how to treat it. In my mind, I just wanted to know whether I have VGKC antibodies. I hadn't even considered treatment.
So, here you are at that stage. I don't think anything much has changed from where you were before. You do now know that you have an autoimmune disorder, which is important. It's possible that some kind of tumor may have triggered it (which is true for all of us even without the VGKC test), but remember that the majority of cases are not related to tumors. There are a few anticonvulsant drugs that have had good results (phenytoin is one), which you might want to try if your symptoms are bad. The really good news is that this pretty much confirms that what you have is PNH, and you can stop any worrying about ALS, MS, etc. if that's what you've been doing.
Jodi
