I am back for advice again...

[Jenn0030]

Okay I  haven't really left, I have been lurking for sometime.   I will make a quick summary of my current problem, I would appreciate any advice as you all have been great in the past.

My 1st neuro ignored several lesions on MRI and said that they were signs of aging ( I am 32).  I had been dx with bilateral ON and trig. neuralgia, (also nystagmus,MI, I could spend all day listing problems, etc.) she said I had less than a 20% chance of developing MS in next 10 years and she would follow me closely.  After a good kick in the butt from here I got a second opinion from the CC, from a ms spec that I loved, she didn't think that I had MS but my chances were much higher.  I have seen her twice and she has referred me to someone here locally to follow with.

The problem is the neuro here.

I saw a local MS specialist who said he could manage my epilepsy and monitor the lesions (that were not MS) I have seen him a couple times.  I think he kinda gave up on me in the summer, I have left temporal lobe epilepsy which apparently is very have to control.

He decided to pass me off onto someone else in the practice who was a specialist in epilepsy.  He seems like a nice physician, had a decent bed-side manner.  He oreder several tests and asked that I return back in 6 months ( found that a bit-odd, but whatever).  I did one of the 3 ordered EEG and a MRI (I had just had one done 1 months ago) and called the nurse 1 week later.  She said that my MRI was unchanged from the previous exam (1 month ago - duh, I would hope so).  the MS lesions were stable

UH....the MS lesions were stable ( I will come back to that later)

She wants me to see a cardiologist as I may be having episopdes of syncope that need to be evaluated.  (Now I can't remember what happens when I have when of my grand-mal seizures.  I can only say that I do remember the scared look on my husband face when I eventually come to, he describes it as muscles tensing eventually shaking, some spitting up.)  This has only happened a couple times in the last 16 years, usually I get a buzzing or sound distortion that lasts less than 30 seconds.

I then asked if she was saying that I didn't have epilepsy as I have been on various com of 9 different epilepsy drugs over the last 16 years.  She wouldnt say yes or now.  So I will have to assume that she may be giving an answer in her own way. I made sure that the doctor had reviewed my previous EEGs when I was a teeneageg that established my diagnoses of the TLE.  She said that he had.

And then the kicker...

So these lesions, you said the lesions are stable?  "Yes, the MS lesions are stable"
I didn't know I had MS lesions, was my response

I heard silence and ummmm, well that is not the doctors speciality.  Let me talk to him about it and I will have to call you back

That was at 1:30pm and I never heard back


Now I know that there are cardiac conditions that can cause syncope (that can even look like a seizure).  I have had the last couple of EEG with normal results, during my teenage years these were always abnormal, I am hoping that anyone can provide some insight.  When I did my research (internet) cardiac syncope looked like there was no warning signs, I have a aura (like the typical person does with TLE), buzzing sound in ears or distorted sound.

Help, someone, please?


Jenn  

[Jenn0030]

I called my cardiologist today and scheduled testing to rule out cardiac syncope.  I will see him this week.  

I then called and left a message with the nurse in the neuro office that I needed the referral and my office notes faxed over to my cardiologist.

I have two different neuros that I see in the same practice one is a MS specialist and one manages my epilepsy.  The nurse who mentioned the "stable MS lesions" was a nurse for the epilepsy doc.  She seemed suprised that I was suprised by her statement.  It is frankly not a discussion that I want to start on the phone with his nurse.  I will continue with the testing this week and then request an appt to see him next week.

[sllowe]

Hi there,

You still with us?

How are you feeling?

Hope you get back to us soon.
-Shell

[lmax0021]

Hi Jenn

I am sorry for all that that you have been going through.

The most common cardiac condition that causes people to pass out is called neuro cardiogenic syncope.  It is usually diagnosed by an electophysiolosgist with a heads up tilt table test. I would say that probably 80% of those I've known with the condition do feel something before they pass out. I can not remember exactly how they say they feel but I don't remember anyone mentioning an aura.

Not sure if this helps.....

Hope you get some answers soon!!!

[Lulu54]

Hi Jenn,
Syncope (fainting) is unlike epileptic seizures, as I understand it.  You know we're not doctors here , but we do know a variety of things that we can share.  The syncope/seizures would have absolutely nothing to do with MS.  

I am trying hard to think of something to write to help you because I am shocked about the MS lesions, not lesions, they are lesions,  craziness that you must be going through.  

Cardiac syncope can happen for a variety of reasons, the most common one probably would be the change in blood pressure when you go from a lying or sitting position to standing.  It can also happen with structural problems within the heart.  Like I said - there are a lot of different reasons why fainting couldd be happening.  

Can we assume you have been regularly seen by your doctor for your epilepsy?

I know how confused I am about this, I can only imagine how difficult it must be for you.  Please  keep us posted what the doctor says.
Lulu