Update- and FINALLY answers

[crswin]

I went to Duke yesterday and was told that I absolutely do NOT have MS or anything neurological in nature.  The neuro was an MS specialist and stated that the symptoms that I have been experiencing for the past 8 years were due to split second electrical mis-fire episodes in my heart.  He stated that since these were short and heart related, that it would explain all of the 'normal' test results in all of my MRIs, VEP, and other lab work.  He went on to state that the heart misfires explain the racing heart sensations that I experience in many of the episodes.  He also stated that this could explain the stroke (and MS) like symptoms that I have experienced- such as tingling in my right side, fatigue, slurred speech, racing heart.  He also recommended that I try to have blood drawn immediately in the case of another attack and wear a heart monitor.  However, I have had one in the past, and- of course- the episodes never happen while I have the monitor.
Since I also have a gene for MTHFR- a genetic marker for a hormone effected blood clotting condition, resuming blood thinners and taking folic acid should prevent future attacks.  I have never had an epidode while I was taking a blood thinner, and felt great while I took Lovenox shots during and after my pregnancy.  My thinking is that thinner blood makes the misfiring minimized in terms of my perception of them and the symptoms that follow.
** Does this diagnosis make sense OR sound familiar to anyone?
I would have never thought that these problems were heat related, but I am glad to have found my needle in the haystack- after almost 8 long years.
For those of you in limboland, I guess that this shows that you need to be persistent and keep an open mind as to what could be causing your symptoms.  All of my past doctors and I were sure that my condition was neurological in nature, but it turns out that it is not.
I want to thank ALL of you for your input and support as I delt with all of my medical let- downs and dead ends in the past few months.  You really helped get me through it.  Although I do not have MS, I will still reamin a member on here- if you all will let me :) I really enjoy all of the support and advice that you all have to offer.
THANK YOU!
Hugs to all*
Crystal

[crswin]

Thank you- I have gotten the name of an electrocardiologist and am awaiting the neuro's notes to make it back to my GP so I can get the referral and make my appointment.  I am trying to gather as much knowledge as possible in the meantime.
THANK YOU!

[Lulu54]

the concensus from my women heart friends is this neuro was speaking verrrrrry slowwwwwly trying to make sure you didn't get freaked out by the concept and was trying to put it in the simplest terms possible. shame on him for not being clear with what he was telling you.

check out www.acc.org/media/patient/chd/cardiac_arrhythmias.htm

for a lot of useful information so you can be prepared to have an intelligent fact based conversation.  - Lu

[Wobbly]

wow.. it's good that you have answers and a direction... let us know how thing progress and take care

wobbly
undx

[Lulu54]

girl, you definitely sound like you need a tune-up.  the racing heart can be controlled.  it would not surprise me if you are a candidate for an ICD - don't be scared of the thought.  It can control that racing heart and keep you alive for a long, long time.  There are lots of young women with this experience at that other place that I mentioned to you - they will give you the details.

[crswin]

Thank you!  I planned on getting a referral to a cerdiologist, but now I will make sure that it is an electrocardiologist, rather than to waste time being where I do not need to be.
have worn a H- monitor in the past and of course did not have an episode, but the event monitor makes much more sense,
I have lost a bit of faith in my GP, but will be forceful with getting this referral.
Over the summer some of my episodes went up to 210 bpm for close to 15 min.  All of these episodes 'click' on and off- with no middle gear- just normal and high speed.
I plan on investigating further and keeping you all posted on my findings.
Thank you you for your input on this.

[Lulu54]

Crystal,
congratulations on not having MS - that is good news that all of us are happy to hear.

I am by no means a cardio expert, but this split second misfire nonsense does make sense if you apply the correct words to it and not  his terminiology that sounds like your car needs a tune up.  :-)

Yes, the heart does have electrical impulses and  there are electrocardiologists whose job it is to regulate the heart rhythm through the use of ICD (implanatable cardiac devices) or through cardio ablation therapy  where the electrical current is short circuiting and through catherization they zap the offending pieces and parts.  Is he trying to tell you that you have an arrythmia?  Remember, I told you I am no expert, just a heart attack survivor.  

I've already posted this question on my women heart board and I will send you that address in a PM  - the medhelp censor doesn't like it when I put it out here.  Please go introduce yourself to these wonderful women and then pick their brains.  They will help you to figure out your next set of questions.

If you really have this problem, you definitely need to be seen by a specialist in this area of cardiology.  Did your neuro give you a referral?  Certainly he didn't just send you out the door without a followup scheduled with some one else?  

Now the good news - there are lots more good compassionate cardiologists out there than neurologists.  Ask around for recommendations and find one you are comfortable with.  I like to ask nurses who they would want to treat their family members- they know the good ones from the stinkers.

Please come back and let us know how you proceed with this next step.  If you are having this ongoing problem that hasn't corrected on its own, you defintely need to see  someone about maybe getting your ticker reset to work at 100%.  

My heartfelt best to you,
Laura/Lulu

[PastorDan]

My last Holter monitor recorded hundreds of premature atrial contractions in the 24 hours that I wore it, but in only two or three instances did that irregularity carry into a second consecutive heartbeat.  Funny feeling, but essentially harmless.  Years ago a prior PCP tried to straighten it out with beta-blockers that had me slithering out of my chair onto the floor in the middle of the day.  Evidently, the lowest possible dose of the weakest possible beta-blocker is way too much for me, or at least it was then.  He replaced them with a calcium channel blocker, so each successive doctor I've seen has assumed I'm hypertensive because it was on my medications list.  I wasn't hypertensive until now.  I've been on statins as far back as I can remember, and my total cholesterol hovers between about 145 and 155 nowadays.  My carotid ultrasounds were remarkably clear for an overweight middle aged American male.  I'm with Q; not having MS is a good thing, but test all theories with those who would know.  Best wishes.

[Quixotic1]

Okay,  First I am thrilled that you do not have MS.

But.......his explanation makes absolutely zero sense to me.  I am not a cardiologist and what I don't know about cardiology would fill the Smithsonian.

Lulu is one of our cardiology victims and experts and I will let her explain her view.

A "split-second" misfire of the heart?  I can't believe that this would do squat to anyone.  Our hearts are NOT that fragile.  Huge numbers of people with healthy hearts have the occasional premature contraction of the heart muscles giving them an extra beat and suffer no consequences.  He is saying that you must already have a clot formed in the heart and that any extra or missed beat breaks one off and sends it to the brain giving you a mini-stroke.  Also he is saying that you have an undocumented arrhythmia.

So, while this is good news, seems treatable and isn't the MonSter, I would encourage

Man, if that was a consideration I would want to be evaluated by a cardiac subspecialist - I think they are called electrocardiologist or something having to do with the electrical functioning of the heart.

Now we know that people who clot abnormally can definitely have MS-like problems, so that part makes sense.  You may need to wear an event-monitor that you need to activiate when in an episode.  You may need to wear it for a month or more.

But, I think you should see a cardiac subspecialist for verification of this.

And yes, you must (read that MUST!) remain with us.  Not only have we bonded to you and would mourn and miss you terribly, but we can use your words of wisdom in reminding people that not all that looks like MS is MS.

Good news!

Quix