Sunday, October 14, 2018

Neurologist Fears and Hopes

I have my appointment with the NEW neurologist in November.

I'm a bit nervous.

I imagine the appointment, and in my imagination, it always turns out horribly. I leave feeling angry and hopeless.

So...here are the scenarios I fear will happen.

1-The doctor hasn't looked at the EEG report from DFW Neurology; nor has he looked at the EEG snapshots.  This is because either they never faxed the form to DFW Neurology; DFW Neurology got the fax but never sent in my records; or the new neurology center did get my records, but they never bothered to look at them.

I show the doctor the EEG report and the snapshots. He looks at them for about 3 seconds; then says. You don't have epilepsy.

If I'm feeling brave and assertive, I would say to him, Uh, no. You can't even dismiss epilepsy with a 30-60 minute routine EEG. So you certainly can't rule it out after looking at 90 seconds of my brain wave activity.  

2. Same first paragraph as above.  But in this one, the doctor looks at the EEG report and the EEG snapshots and says something like.  Well, these don't look like seizures to me.  But since the report says they saw seizure activity, we'll put you on medication.

This would not be okay with me, because I don't trust the opinion of DFW Neurology. The only reason I'm going to a new doctor is I want a second opinion.  So I certainly don't want them relying on the DFW Neurology's opinion.

Okay. So that's what I fear WILL happen.

Now I'll talk about what I'd like to happen.

In the best scenario (like fantasy scenario, here). DFW Neurology has actually done something decent. They faxed over much more snapshots than they gave to me.  So the new doctor has something to work with. The doctor has come prepared to these appointments. Not only has he spent a fair amount of time studying the report and the snapshots, he has asked some of his colleagues to have a glance.

Then the neurologist says either,

A) We looked carefully at the report. It does seem like you are having seizures. We need to talk about medication.

B). We looked carefully at the report. The stuff the EEG software found is something that looks like seizures, but it seems to be actually (insert medical jargon here). Why don't we take a wait and see approach. Let's see how you're feeling in six months, and if you're having more symptoms, we can do another EEG.

In the not-so-bad scenario, the doctor hasn't seen the EEG report or snapshots prior to the appointment. But when I hand him the material I've brought, he studies them for enough time to make me feel he actually cares and is interested.

Then he says something similar to A or B above.

BUT....

Since DFW Neurology provided me with only 90 seconds of footage, and only 30 of those seconds are ones where the computer saw spikes; I think with this version of B, the EEG should probably be done sooner rather than later.




Edited to Add 11/6-I had my appointment today. It didn't go wonderfully, but it didn't go as bad as I feared.

First of all, the doctor seemed super nice and very thorough. His neurology exam was so much more longer than Dr. de Jesus's With de Jesus, it really felt like she was just quickly going through the motions. Or like a quarter of the motions. Her test was probably under 2 minutes. His was about 7 minutes. I was pretty impressed.

Once again, DFW Neurology fucked me over. They did NOT send any of the snapshots of my EEG to the new neurologist, even though I requested this.  I absolutely despise DFW Neurology. I hate them so much that I'm tempted to study dark witchcraft just so I can curse them with horrible curses.

Yeah. Don't worry. I'd save some of my evil spells for Trump as well.

The other thing is....I went to the wrong doctor. I'll take the blame for that. 

What happened is we looked at reviews and found this doctor that had really great reviews.  I THOUGHT it said he was an expert at reading EEG's. Then later I went back and saw it said EMG's.  The doctor is an ALS specialist.

At the same clinic, they have a whole epilepsy department. It sounded awesome. I started to write my primary care person to ask if she could switch my referral. Then on a whim, I decided to check the reviews of the epilepsy doctors. Those reviews were not so good. 

I didn't switch. I think then I was in the mode of I'm not going to go. I'm going to stop this whole nightmare process. I'm done. And then it evolved to, I'll go if they call me. 

I was hoping they wouldn't call me.

But they did.

I asked, the person on the phone, if the ALS doctor also dealt with other things, and they said he does.  It just turns out the other things doesn't include epilepsy.

So....

The doctor is going to help me get a referral.  He said they'll try to get more info from DFW Neurology.

We'll see if that happens.

I doubt it.

I think what we WILL see from DFW Neurology is collection notices asking us to pay for the video portion of the ambulatory EEG that I refused and never had. 

DFW Neurology is evil.

Since I don't have witchy powers, I can't make bad things happen to them.  But I can wish and hope.

I doubt my wishes and hopes will work, though. I'm realizing more and more that the shithead bad guys in the world keep winning and winning.