Another strange twist (just great...)

Well, in a bizarre twist, Dr. Hiner, the neurologist and autonomic-disorders specialist who I saw (months ago) per Dr. Hecox’s suggestion, called me today.

They’d done a blood panel, and the results had come back all normal, except for one, a rare test that was sent up to Mayo to be analyzed. The reactor was down, and so that blood test was delayed for weeks and just recently performed. It was some type of acetylcholine antibody test. (I’m not sure which precise one; I think there are multiple subtypes.) And … it’s abnormal. The levels were elevated, he said.

So, Hiner (not Hecox – I told him Hecox is out of the picture) strongly suggested I come back for the full autonomic testing I’d canceled once before. He says this sort of thing can also potentially indicate immune-system disorders or problems.

I did tell him to call Dr Hain and inform him of everything so he’s up to speed. (Curiously, Hiner, who knows of Hain, calls him “primarily an inner-ear specialist.” Talk about an overgeneralization.)

Great, now I’m really confused… but at least I get to make one more trip back up to Wisconsin and spend probably four hours getting tested…

This frustrates me no end. I think (no, I know) I’m already on the right track and yet a blood test comes along and throws a ten-ton question mark into the mix.

Hi George, that is truly frustratying. I think that test is done to determine if you have myasthenia-gravis, which is a muscular autoimune disease. I don’t know anyhting more than that but I think I had that test at some point and mine came back ok. Keep us posted on what they do about it and whether they think you may have this condition. Good luck. Ben

George,

you just said it yourself —“I think (no, I know) I’m already on the right track and yet a blood test comes along and throws a ten-ton question mark into the mix.” Just hold on to that statement - easier said, I know. but, you seem so confident in the dx. Sure, go for the test, but know that it is probably going to be fine, and try not to let it frustrate you. It’s not throwing a big question mark into the mix, if you know you are on the right track, as you indicated.

Ben, yes, I think you’re right about myasthenia-gravis. That’s supposedly the main “thing” the blood test is for. I know right now I don’t have THAT.

Lisa, as I think about it, your logic makes more sense than mine. I’ll wager the BIG test comes back normal. What threw me for loops was that the first test, however, was not normal. That made my own ideas somehow seem less than 100% certain to me at the time.

I think I am a bizarre case either way – as I’ve posted before, I’ve had the Lyme disease, Mycoplasma and Epstein-Barr Virus titers all coming up high (EBV was five times the normal range!) and now the acetylcholine antibody receptors too. What, did my immune system swallow a Medical Dictionary of Infectious Diseases or something?

Hi George,
I am by no means making light of your blood test result, but there is a saying in medicine that if you keep looking for something in a patient, you will find something in everyone. Don’t chase Zebras so to speak when there is a big Elephant (MAV) in the room. I’m fairly confident you will end up being fine on all these unnecessary additional tests. But, once the docs have the bloodwork, they are under obligation to follow up with the patient and pursue further tests.

Please do not worry for now… .you have plenty of time if necessary. Your first doc was clearly trying to find a needle in a haystack and you can find that needle in any person if you do enough tests. These “needles” are almost always nothing.

Best,
Lisa

You have good insight, Lisa. I understand all of what you’re saying. I think you’re right about how, basically, if a doctor looks long enough, he can find something “abnormal” in anyone.

What is funny, in an ironic sort of way, is that the EBV, Lyme and mycoplasma titers were the very first tests Hecox asked for – he walked me down to Immunology myself the same day of my first visit. (Same thing with that Dr. Hiner – the only blood test he asked for was the acetylcholine, and he got a result!) Well, I suppose you can hit oil the first time you dig, every once in a while.

Funny thought just occurred to me. The old saying, as you yourself used it, is “looking for a needle in a haystack.” In my case, I’ve been harpooned so many times (had so many blood tests done), I think it’s more like “looking for hay in the needle-stack”!

Hi George,

I have to agree with Lisa on this too. Stay on track with Hain and don’t worry about this one. Even in statistics, if I have a whole bunch of data in front of me and I go “fishing” for correlations, sooner or later you find one even though it’s probably meaningless. Tests like the PSA for prostate cancer can be off as well. My Dad just spent the last 2 months working out which op he would have done for his so-called growing cancer. They retested again recently and his PSA was rock bottom again. They said it wasn’t worth worrying about even though there there is a small but insignificant growth in there.

Scott