Wednesday, December 20, 2017

Confusing Doctor's Visit

Yesterday I went to a neurologist.  Ever since last February, I've been having myoclonic jerking.  My toes, feet, legs, shoulders, hands, mouth, etc. move on their own.  I usually actually kind of like the feeling, but I wanted to make sure I don't have something serious and treatable like a brain tumor.

We talked about the jerking. The doctor called it twitching.  He seemed to not want to use the term myoclonic.  I didn't really understand that, because from what I read, myoclonus is a symptom not a diagnosis.  And to me, twitching is when the muscle under your skin moves.  When I first started Googling my symptoms, I read the wrong stuff because of that. It took me some time to get things straight. And when I tell other people, they seem to get confused as well.

In case anyone reading this is confused, this is how I personally distinguish the difference. Muscle twitching is when you have that freaky feeling under your skin. You look and you might see something that looks like a tiny alien insect in your body trying to say hello.  You can't replicate this movement, because you can't control the muscles under your skin.

With jerking, I can replicate any of the movements.  They are all movements I can do, by my own choice, when and if I feel like it.  BUT these movements are happening to me not by choice. They are a complete surprise.

For those who still don't know what the fuck I'm talking about....

They happen normally to people sometimes as they fall asleep. Have you ever been falling asleep and suddenly your legs kick and you wake up?  It's quite a surprise?  Well, that happens to me when I'm awake and not on the verge of falling asleep.

Shit.  I'm blabbing on and on, and that wasn't even supposed to be the subject of my post.

I've been having some other symptoms the past couple of years.  One of them is audio hypnopompic hallucinations.  This means I am awakened by things that are not really there. For me, it's almost always my son calling out. Mom?   He usually sounds annoyed or in need of help.  I will sometimes jump out of bed and rush upstairs.  Other times I stay in bed where it's nice and warm.  Don't worry, Dina. You're just hallucinating. Jack is fine. Asleep.  Then I worry that this time it's not the case.

I haven't been too worried about the hallucinations, because I've educated myself via Google and understand that hallucinations are not always a sign of psychosis. Sometimes normal, healthy people just happen to have them.  This is especially the case with ones involving sleep.  Sometimes it's caused by a neurological issue, and since I'm having the myoclonus, I figure it should be maybe examined.  Also, I've had one or two instances where I've had the audio hallucination and I've NOT been asleep.  So I'm leaning towards a neurological cause.

So, anyway, I told the doctor about the hallucinations. I think I expected him to be reassuring about it.  Give me the basic, it's probably nothing. It happens to people sometimes. But it could be a symptom of epilepsy, or something like that. We'll look into it.

Instead, he seemed frighteningly concerned. Like I had told him I'm coughing up blood or my pee is brown.

Maybe I'm exaggerating. He probably didn't seem THAT freaked out.  But he didn't seem to think it was probably normal.

What's crazier, though, is he told me it's not a neurological thing and I need to talk to my primary care physician.


From what I read hallucinations are associated with neurological issues. For example, epilepsy sometimes involves hallucinations.  That's also the case with myoclonus, and I'm getting an EEG next month to test for that.  So, how can he be a doctor, who deals with epilepsy, not know that one of the symptoms is hallucinations?

Also, we were told his expertise is in sleep medicine.  How can he be an expert in sleep issues and not know about hypnopompic hallucinations?  Does he also not know about sleep paralysis?  Narcolepsy?  Because I was rereading this morning, and saw that the hallucinations are associated with narcolepsy.

What happened at that appointment?

Do we have a doctor who's seriously lacking in the knowledge he's supposed to possess?

Did he misunderstand me?  Maybe he thought I said something else?

I know what you're probably thinking.  Why didn't you ask him?  Don't worry. I keep asking myself the same thing.  Why didn't I speak up?

I think I was tongue-tied.

Now I'm plagued by this whole thing.

I know that many people talk about bedside manner of doctors.  I think they want someone who is friendly, kind, patient, etc.  And the neurologist was like that. He was very friendly—personable.

I think, though, what I want in doctors....

No. What I DON'T want in doctors is to hear, from them, something that is different from what I've read online.

I imagine some folks reading this are rolling their eyes. You can't believe everything you read online.  This is true.  I would trust many doctors more than some of the stuff I read on message boards or quack websites.  But when it comes to news articles from places like NPR, CNN, etc; when it comes to medical sites such as CDC, WebMD, and Mayo Clinic; when it comes to scientific studies...well, I DO have a lot of trust in those resources. And I don't want doctors who have knowledge and ideas that greatly differ from what I've read there. If they do, they better have a very logical and compelling reason for why they feel differently.

I was thinking about how doctors should usually respond when we give them a symptom.  I don't think they should EVER be dismissive.  They shouldn't say things like, That's totally normalThere's no need to worry about it. You're fine.  I think what they should say is something like, This might not be a problem.  Sometimes this symptom happens in healthy, normal people.  But let's make sure this is not something serious.

Well, actually I think that would probably be included in bedside manner behavior....

I guess we all have different ideas of what a good bedside manner is.

For me, it's listening well, having faith that patients have the ability to be somewhat medically literate, and not being dismissive.  For other people, it might be conveying bad news gently, or being able to lighten the mood with jokes.  I don't know....

On a more positive note.  What I did like about the doctor:  He seemed interested in what we were saying. He didn't act bored or distracted. I liked that he would ask us if a symptom was interfering in our daily life.  Though I like it less if he was asking as a measurement of how bad the problem was.  I like the way myoclonus feels, but that doesn't mean it doesn't have a sinister cause.  BUT I like to imagine he was asking in order to determine whether we need treatment or not.  One of the many reasons I took 10 months to go to a neurologist is because I feared they would rush to medicate me...even before getting a diagnosis.  I imagined struggling to explain that I just wanted to make sure nothing is wrong and that I'm not bothered by the symptom.  The neurologist seemed to understand all this.

The thing is....

A few years ago, I suddenly lost my appetite and lost about 10-20 pounds in a short time. This was a few years AFTER having an eating disorder in which I had NOT lost my appetite, but just wanted to be very thin.  I worried about myself because loss of appetite/weight loss could signal something deadly like cancer.  But certain people seemed to not understand this.  They seemed to think I was upset about being a bit thinner.  Never mind that I was hardly even close to being underweight.  I guess they just thought I was this rare woman who didn't want to be in the somewhat lower side of the normal BMI range.

Also, on that note, people have asked me how I'm feeling, referring to the myoclonus.  I often feel like shit, but it's not the myoclonus that's bothering me.  So....

Well, it's just nearly impossible to get people to understand that.

We can have dangerous symptoms that cause us no daily grief...besides the fact that it worries us.  And might eventually kill us.  We can also have benign symptoms that aren't at all dangerous, but they cause us persistent pain and/or discomfort.

Anyway, if we have found a doctor that understands the above paragraph, maybe I won't mind so much that he has a blindspot when it comes to hallucinations.