What do you do when two different specialists think they're right?

[dmnckvrs]

The saga began in August.

To make a long story short, the neurologist is convinced it's seizures and the cardiologist thinks it has something to do with my right ventricle. I've been taking Trileptal since December and now I'm wearing a 30 day Holter monitor to catch an arrythmia. I recently went in for a cardiac MRI..and since I had a brain MRI earlier, I thought it would be a walk in the park..I was wrong.

They're both convinced they know what's wrong. Maybe it's possible I'm epileptic AND have a heart condition..but good grief..I'm 23..before this summer I didn't go to a doctor except for regular check ups. I feel like one of them, or both, is wasting my time/money.

Rant over.

 

[Nakamova]

To be fair, it is complicated, and they could both be right: Cardiac arrhythmia can cause seizures (in which case they would be considered physiological non-epileptic seizures). And seizures can cause cardiac arrhythmia. Finding out which came first is the tricky part of course. Do your neurologist and cardiologist talk to each other? It would be nice if they saw themselves as part of the same team.

How much longer do you have to wear the monitor?

 

[dmnckvrs]

To be fair, it is complicated, and they could both be right: Cardiac arrhythmia can cause seizures (in which case they would be considered physiological non-epileptic seizures). And seizures can cause cardiac arrhythmia. Finding out which came first is the tricky part of course. Do your neurologist and cardiologist talk to each other? It would be nice if they saw themselves as part of the same team.

How much longer do you have to wear the monitor?

Thank you, I wish the cardiologist would have explained it to me like that. I've had it on for about 2 weeks so another 2 to go. Nothing significant has happened since I've been wearing it (or since the last time I went unconscious, fingers crossed). The neuro and cardio don't correspond with each other, as far as I'm aware. I seem to be the one relaying the information between the two.

I see the neurologist on 29th, and I'll bring it up to her as well. The only thing I want to ask her about is a strange sensation I've had quite a few times, even before I first saw her, but never thought anything of it. I get a strange feeling in my chest and then it's like my neck stiffens and then travels to my mouth, where my mouth then "twitches", or at least it feels like it does anyway, I've never had a mirror handy. Have you ever heard of something like that?

 

[arnie]

That strange sensation and the mouth twitching you just described sounds a lot like a partial sz of some sort. I get what I would describe a a cold feeling in my stomach which sort of rises into my chest and spreads to my arms sometimes. If it keeps spreading I swallow, gasp for air a time or two, and/or smack my lips. It lasts 30 seconds to a minute or so. When its over I'm drained and tired for a while, especially if I have a lot of those in a day.

Good luck finding what is going on with you!

 

[Nakamova]

Just a guess --maybe the strange feeling is related to activity of the vagus nerve. It's one of the big cranial nerves that runs from the brain through the carotid area in the neck down to the chest and into the abdomen. Among other things, it's responsible for your heart rate, stomach movements, and some of the muscles that move the mouth. Given the path it travels, maybe the nerve is causing the sensations you describe.

Activation of the nerve can also sometimes lead to sudden drops in heart rate and/or blood pressure -- in some case this leads to the kind of fainting called "vasovagal syncope". So it has both cardiac and neurological implications...

 

[dmnckvrs]

That strange sensation and the mouth twitching you just described sounds a lot like a partial sz of some sort. I get what I would describe a a cold feeling in my stomach which sort of rises into my chest and spreads to my arms sometimes. If it keeps spreading I swallow, gasp for air a time or two, and/or smack my lips. It lasts 30 seconds to a minute or so. When its over I'm drained and tired for a while, especially if I have a lot of those in a day.

Good luck finding what is going on with you!

Thanks arnie, like Nakamova said, it's amazing how complicated this is, especially when symptoms vary from person to person.

The two times I was discharged from the ER, vasovagal syncope was what they presumed it was. I had to go for a Tilt test and it was negative. I'm SO sick of tests!

 

[Claire7]

Nakamova - I think that's what they said my first episode was. I woke up lying on my 19 week baby bump. It felt odd so I immediately got up, went downstairs, got a biscuit as I felt faint and then it happened as I sat down. The paramedics said that my blood pressure was really low and when I was in the ER the doctor listened to that nerve in my neck and he said the blood flow was restricted to my brain??? It was like that for about 48 hours and then I was discharged for follow up tests in cardiology and neurology. I didn't have any of these tests for weeks and by then all cardiology tests were fine. The neurologist diagnosed vasovagal syncope (convulsive syncope) I think due to the tests in ER and that fact I had barely any confusion after and very quick recovery but no one has ever really explained it properly.

Not sure about the 2nd episode though. It was in my sleep but I was lying on my front at the time. Not pregnant that time though!

 

[Dignan]

This is one of the biggest problems I run into.. there is no individual, other than the patient, who will quarterback the treatment process when it deals with multiple body systems. Often, specialists' knowledge is limited to their own small area and they can be completely ignorant of things dealing with other body systems, even if those things are caused by an issue that does fall within their supposed realm of knowledge.

Unfortunately, our problems often do involve multiple body systems and the specialists don't communicate with each other. They must understand that they aren't working on an assembly line, but rather that they need to investigate a problem and seek out knowledge from others when needed.