Originally Posted by Stellatum
Hi. I'm sorry you're going through so much at once.
I don't have any answers or suggestions to your big questions--just one minor comment. You say that your blood test for MG came back abnormal seven years ago, but a recent one came back normal.
First of all, antibodies in the blood fluctuate, and the level of antibodies is not indicative of the severity of the disease. Many people here tested negative at one time and positive at other times. There are a lot of us, too, who have never tested positive and are still diagnosed with MG.
Second, the fact that you had IVIG a few months ago might be the reason why the recent blood test came back normal.
So the fact that your recent blood test is normal doesn't mean you don't have MG.
I wish I could help with your question about swallowing. It is definitely weird that you can swallow while asleep, but not while awake. I think it is a very, very good thing to get a second opinion from another neurologist who specializes in neuromuscular diseases! I'm a huge fan of second opinions. Every neuro has different experiences, different ideas, different areas of expertise.
Some people who don't improve with IVIG improve with plasmapheresis. Maybe your neuro would be willing to try that.
I hope you get answers. I found that stage of my disease to be the absolute worst--not knowing what's wrong, wondering if it's psychosomatic, not knowing what's going to happen next--it's enough to throw anyone into a terrible state.
Thank you Stellatum,
For your post, understand and good advise. I will get that 2nd opinion afterall.
My Neuro seems afraid to send anyone for plasmapheresis. I asked him why he didn't send me for plasmapheresis instead of a third rescue of I.V.I.G. since the first two rescues didn't work. He said the I.V.I.G. was just easier to take. Thats when I told him it wasen't easier then having to have and live with a feeding tube. He said both treatments are considered the same in some testing so he went with what would be easier on me.
It just dosen't make sense to me. I often wonder if he would have done the plasmapheresis first instead of the I.V.I.G. it would have stopped the swallowing from getting this bad.
Whats done is done. I will try a 2nd opinion and get some fresh ideas.
My neuro nurse said that she felt that Yes I have M.G. and it went into swallowing crisis, but now she feels it put a bad fear in me to swallow and choke.
It's all very confusing.