MRI perfect, but found NCS and still think possible MS

[Lgprblm]

I just spent 2 1/2 days in the hospital getting poked and prodded.  The attending neurologist seemed irritated that I was there.  He performed all the tests to determine what was causing the numbing and gnawing ache in my left leg and arm.  After 1 1/2, he said everything looks fine, I'm going to send you home.  

I said, but something's got to be causing this, and I'm falling.  I'm worried that I'm going to continue to fall.  What should I do?  He decided to test me for POTS and keep me in the hospital for another day.  What I thought was low blood sugar my whole life turned out to be Neuro Cardiogenic Syncope, which causes fatigue and fainting.  They do not think this is the reason for the falling or numb leg and arm, but it does explain the level of fatigue and my inability to stand for extended periods of time.  He wants to send me to Cleveland Clinic for more testing.  

I'm going to get a second opinion because it seems like he gave up way too quickly, and I don't want to spend several days at Cleveland Clinic if there is something that can be done here.  

I didn't know if this could help someone else, so I wanted to send it out...

Take care, Karina

[Lgprblm]

I'll check Grubb out!  Thanks for the info!  Have a terrific week!
Karina

[Lgprblm]

Let me know how your daughter's visit turns out!  I'm very anxious to hear.  I also have a 14 year old daughter, so I can only imagine how she is dealing with this.  

Thanks!  Take care!
Karina

[oldriverguide]

Hi Karina, I hope you find all of the answeres you are looking for and I am sorry to hear about the POTS diagnosis. Since it sounds like you are in Ohio,  a WORLD expert in POTS is Dr. Blair Grubb at the University of Toledo Medical Center.  He has quite literally "written the book." Below is his contact information and a title of the book.  Best of luck to you.  -Melissa


Blair P. Grubb,  MD
--------------------------------------------------------------------------------
Clinic Phone: [phone]
Clinic Fax: [phone]

Departments:
Medicine Cardiovascular

Syncope: Mechanisms and Management (Hardcover)
by Blair P. Grubb (Editor), Brian Clshansky (Editor), Brian Olshansky (Editor)

[sllowe]

Hi Karina!

Thank you so much!  I have read up on the salt and some of the meds. She is only 14 though, so I'm hoping it can be controlled w/out them. She has learned to lay or sit when she feels this way, and that has mitigated a lot the times when she was on the verge.  She averages a few times a year w/actually passing out.  The Dr. and group i'm seeing are Cardiologists, and they are specialists in Electrophysiology.  They were highly recommended to me and we go tomorrow.  

I'm not going to bring up the tilt table to her, but thank you so much for explaining what occurs, at least so I know what will happen. I'm not sure what we are in store for tomorrow, if they consult and test, or if they consult and line that up separately.  

That's amazing w/the Lexapro - I had no idea it worked with the heart rate that way.

Again, thank you again for all the info you've provided, I'll let you know what happens....
SL

[Lgprblm]

SL

The doctor said that with NCS, you can treat it with anything as simple as... go home, increase your fluid and salt intake and take it easy all the way to a pace maker.  Your brother in law may still need that if the medication doesn't help.  Believe it or not, he prescribed for me to take Lexapro (10 mg), which is actually an anti depressant, but it helps the brain tell the saratonin levels to release at the appropriate times which keeps your heart rate up (I don't totally understand the affects yet, but that's the gist of it.)  

I would suggest that your daughter get in with a cardiologist and get the tilt table test.  It was really scary, but it was fast.  Basically, to elaborate, they stood me on a table flat, strapped me in, hooked me up to an IV (in case things didn't go well), and took my blood pressure.  After a few minutes, they stood me up slowly at a 70% angle, and we waited.  After about five minutes, I was really frustrated because nothing was happening, so I figured the doc was just going to tell me nothing was wrong again.  My toes were numb, but they said that was normal.  Then, a few minutes later, I felt a little light headed.  Then, about two minutes later, I started to feel really awful - nauseated, sweaty, nervous.  They asked if I could take anymore.  I heard the nurse say her heart rate is dropping.  Then, I couldn't respond and couldn't see anything, but I could hear everything.  They dropped me down.  They said I would have flat lined if they'd let me go any longer.  Within two minutes, I felt ok again.  It was very odd.  

If your daughter is fainting that much, she should get on meds.  My heart rate dropped below 34 just by standing for 12 minutes - no meds, nothing to alter my physiology.  That shouldn't happen to people.  With meds, this shouldn't happen again (I hope.)  

Good luck to you and let me know how it goes!

Thanks, Karina

[sllowe]

My daughter has been fainting for years now.  I've gotten the typical dx for her, which is dehydration, etc. Her ct's and labs have always come back normal. I knew it had to be something else and basically taught her to learn her triggers and thought it was a hidden sugar issue. Within the recent years, she's gotten banged up with passing out and I've done my own digging on the issue.  I have her lined up with an Electrophysiologist now who feels kids shouldn't pass out. I also found out that my brother in law has it, and to think they were going to put a pace maker in him until another dr happened upon it.

So glad your dx'd now w/that. . .you can chalk something else off your list now and feel relief being in the "know." I was going to ask you if they did the tilt table.  It was scary huh? I'd be interested to know if you wanted to elaborate.

Thank you too for your support and I wish you mom some easier days. .
SL

[Lgprblm]

Thanks SL,

My mom has POTS, MS, fibromyalgia, and narcolepsy.  She's just a big old basket of problems. :-)  So, when I went in, I told them that.  He didn't decide to test me until I pushed him.  When he did test me, my results were "a brother" to POTS.  Instead of my heart rate increasing when my blood pressure dropped (POTS), my heart rate decreased.  I stood on the tilt test for 12 minutes, and my heart rate dropped below 34, then I about flat lined.  They dropped me back to the lying position and quickly regained full consciousness.  That was an absolutely horrible feeling.  I've fainted before, but most of the time, I sort of adjust so that I don't get sick when I'm standing, like I'll lean over or against something or sit down.  I just thought is was sugar and didn't think much of it.  Now, I know it's more serious, and they've put me on meds to mitigate the symptoms.  Heat has definitely been a problem for me in the past, but I didn't understand it.  Now, I do.  How do you know so much about it?  You definitely understand it.

Thanks for your support. Karina

[sllowe]

Hi there,

Huh, they did a work up for the Syncope (fainting)?  I am familiar with that, and understand why you thought it was sugar your whole life.  What's good is if you have watched your warning signs (and treated like sugar issues), i.e. not waiting long between meals, watching carbs, sitting or laying when you felt faint, getting up slower, etc. you were doing what is best for the syncope and those "triggers" associated with it as well.  Did they explain the syncope to you? That's it's an involuntary and the improper heart rate that occurs w/it?

I sure hope you get to the bottom of what is causing you the falling.  I too do not believe it is related to the syncope (also called vasovagal syncope).  Fainting is not just falling and there is a distinct difference.  Much like the pooling in the legs when you see and hear of people (soldiers) locking their knees out and then passing out, that is what happens with the syncope, however, it can happen under a variety (and very different) of circumstances, for example, pain, over heated, standing too quickly. The heart rate drops (the improper response) when it should speed up in order to pump the blood faster to the brain, the body responds by dropping you (kind of in laymens terms) becase when you are flat, it's easier for the heart to pump the blood to your brain.

Again, I hope they get to the bottom of the issue with you while you are there, and wish you all the best. . .

SL