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.


Edited to add 9/12/19-I've avoided giving an update. Mostly because it's all shit.

The new neurologist said he was going to contact my GP and get me switched/referred over to their epilepsy department. It never happened. I didn't hear back from them.

NOW...this could be because I got a bit assertive about the fact that this clinic did not have any soap in two of their bathrooms.  Like zero soap.  I think that's disgusting anywhere. But a doctor's office?

Well, maybe it's good they didn't go through with the referral. If a clinic can't manage to keep up with basic things like soap, can they be expected to keep up with medical tests, records, etc.

Hey...maybe they weren't mad about my soap outburst. Maybe I'm just right. They can't keep up with the bathrooms and they can't keep up with the referrals.

Anyway....

I haven't been back to any neurologist.

Our drama with DFW Neurology continued a bit. I had reported Dr. Marie de Jesus to the Texas Medical Board. I will say, to their credit, the Medical Board did fight that for quite a bit. Miraculously, I wasn't just dismissed.

I got periodic updates.

At one point, I got a letter asking to sign something so they could use my name in the courts. Or something like that. Unfortunately, we suck at getting mail out of the mailbox. I think I might have signed and sent it too late.

Anyway, short story even shorter. In the end, they concluded that their was "insufficient evidence" that a violation occurred.

My self-esteem is so messed up that I took this to mean, that all along, they were right. I was wrong. There is something wrong with me not DFW Neurology. 

I gave myself a talking to, though. I reminded myself that there are a lot of people who are the victims of violations and the ones who did the violating are found not-guilty.

The letter from the Texas Medical Board didn't say that Maria de Jesus did nothing wrong and that I'm a whiny little bitch who complains about nothing. They said there was insufficient evidence.  I think, because, a lot of it is she said vs she said.

I already know that Maria de Jesus is capable of lying because she lied to me and she lied on the physician notes. So that makes it very easy for me to imagine that she lied to the Texas Medical Board as well.

But I'm glad I made the report. Because if Maria de Jesus tries to pull the same kind of shit again and another patient reports her, maybe it will be then easier for the Texas Medical Board to believe the patient over Maria de Jesus.

In other weird, DFW Neurology news....a few weeks ago, I got a message from my GP office.  They said they got a request for a referral from the neurologist Dr. Nagineni. I had an appointment the following week. They told me they could not grant this referral request until I come in and see my GP.

WTF??????

I had made no appointments with any neurologist. And if I did, it certainly wouldn't have been with Nagineni. Because guess where she works?!

Yes. DFW Neurology! She's actually the doctor I originally had a referral with back in 2018. But when I got there, they put me with Maria de Jesus instead.

Why would I suddenly have an appointment a year later at a doctor's office that I see as my arch nemesis.

And no, it was not a matter of me making a year-later follow up appointment when I had been a patient there last summer.  I remember being a bit surprised that Dr. de Jesus hadn't asked me to make a follow up appointment at our last appointment.

I emailed Sai Duvvuri and accused their office of making fraudulent appointments so they could charge me for a no-show. Where did I get this idea?  One or two of their negative reviewers said they were charged for mysterious appointments.

Anyway, Duvvuri denied it and wished me well. Because he's such a nice guy.

I never heard back from my GP office after telling them how weird the whole thing is. So then I had  to be kind of mad at another doctor's office. Although I forgive them because they gave me 10 more months of birth control pills without me having to beg them.

Other stuff: My neurology drama seems to have ceased to exist...at least in the case of it being a subject matter important to my family.

My family doesn't ask me about it anymore.

I brought it up once with my sister because of the mysterious appointment. It turns out she totally didn't remember that I had all the drama with DFW Neurology.  But at least she did remember that I had neurological issues.

Tim hasn't asked me about it since the appointment last November.

This is astounding because of the fact that he ignored it when I first told him. We later got in a fight about it. He denied treating me in the way I felt he had treated me. Then he temporarily changed his behavior and acted interested and supportive.

I even spoke up again at one point. I think we were already in kind of fight mode. I told him that just because people had stopped asking me about my symptoms, it doesn't mean the symptoms went away. He said something like he understands. Maybe he said he's sorry?  Oh, and he asked me if I felt worse than usual.

But that little exchange didn't change his behavior. He never brought it up again.

And how about when I asked him about his neurology issues? Did that get him to say,  So...enough about me. What's going on with your issues?

Nope.

It really feels like the topic has become taboo.

You know when a child has a behavior the adults dislike and the adults are advised to just ignore it?  I feel that's what's happening here.

I feel my family decided either together or as individuals that I'm making everything up for attention and that the best way to handle this is to not encourage me.  A) don't bring it up B) Act like you don't hear it if she brings it up. C) Change the subject as quickly as possible if she traps you in a conversation.

So, for the last 10 months or so my neurology issues have become like my own little secret world. I don't plan on going to another doctor. And I'll continue with not talking about my symptoms...unless in rare occasions where I'm asked.  For example, my sister did ask when I told her the weird Nagineni appointment news, and I gave a brief answer.  But if I don't bring up anything, I seriously doubt anyone will bring it up.

Even when neurology is the subject of conversation, I'm not asked. Tim didn't ask about my symptoms when I asked about his. And recently there was a discussion about our aunt who has neurology issues. No one stopped and said, Hey Dina. Speaking of that....how are YOU doing?  Because we haven't heard about your myoclonus in like 10 months.

Yeah.

I'm just going to keep things to myself...well, except for this blog. But hardly anyone reads this, so it doesn't really count.