Nystagmus!?

When I went to see the local neurologist on Wednesday, we were able to bring the kids, and they met the dog he keeps in his office. And the smart, able office coordinator was able to meet my kids. And ... going there conveyed the message to the kids that yes Daddy does have a problem walking and yes he is going to the doctor about it. I didn't want that fact to just slide back off the stove for them, into some realm of denial or worse, fear. Bringing them into the waiting room was good, and made it all seem routine and normal. Then they went to a nearby park with my lovely wife.

We agreed that I would stop using the ceftriaxone for now. While it did improve my strength a lot the very first time, it does not appear to be helping anymore. You could say that it's helping prevent things getting worse. But if that's true, we can expect a downturn to show up in the metrics, and I can get back on it.

Also, I think that it is possible that if I do have some non-ALS syndrome like Lyme disease, the occasional application of ceftriaxone may be creating resistant organisms.

I'll be sending some blood off to a lab in Palo Alto which has a reputation of diagnosing Lyme quite well. Yes, I know it is possible that they are very expensive hucksters. But I am cynical as well as cheap, and don't intend to be taken.

I'll also do blood tests for bilirubin and white blood cell count, in anticipation of my going back on riluzole, to see if that will help. I'll be taking it in combination with Namenda, at least initially, and since they both inhibit glutamate, an essential neurotransmitter, I'll make sure to start taking it on a day when my lovely wife is at hand to observe me in case I get weak, lethargic, or lose consciousness. I don't expect any trouble, but you can't be too careful.

I mentioned to the doc that sometimes when walking, I get a slightly unbalanced feeling centered in my head. It's not quite vertigo or dizziness. I just feel like my something is wrong with my balance, and my eyes jerk around looking for a reference point.

Well, he said it might be related to anxiety, and had me deliberately hyperventilate to see if the subjective feeling matched. It didn't, though I respectfully submitted that just because it did would not indicate that anxiety was the cause. Besides, unless I am kidding myself, I am very far from anxious. I'm content. Yes, I know there could be some deep subconscious panic going on, but you'd think it would manifest in other ways, too.

Anyway, then he looked at my eyes, and observed something called nystagmus. That's where the eyes jump around a bit. Apparently my eyes are steady, but then flick around for a brief moment before returning to target. The doc asked me if I were on any new drugs, like pain killers. Negatory. He said it also occurs in alcoholics, but typically when they look to the sides, and mine occurs in the center as well.

He does not remember this happening when he diagnosed me. And he checked his notes. I think it's possible that the Namenda is causing it. But a text search of the prescribing information for Namenda (mimentine) reveals no instances of "nystagmus."

The other possibility, which I like, would be that I do not have ALS, but rather something else. Maybe something treatable. So I will be going to yet another specialist who will look at me.

I asked my lovely wife to do the watch-my-finger test on me, without telling her what she was looking for, and she too was able to detect the jumpy eyes. So now I know that she can help determine when it goes away.

Three things I forgot to mention to him are: In the past week, I've noticed real stiffness in the shoulder joint (plus mildly painful if bent the wrong way), and an increasing tendency of hands to fall asleep when sleeping. It wakes me up, but they recover quickly, without that extended pins-and-needles feeling of normal pressure-induced ischemia. The last thing is that for a couple of months now (perhaps more, but I haven't made note of it), my eyelids have reacted to bright sun by involuntarily closing. I can will them open, but I tend to duck my head and grab for something while my eyelids flutter. It has not been an issue when driving because I wear sunglasses when driving.

At some point I will experiment with stopping the Namenda to see if that is the cause of the nystagmus and sun reaction. It could also be one of my many supplements.