MS and Lupus patient w/Heart Palpitations

[Sandie_Jo]

I have been diagnosed with Multiple Sclerosis and Systemic Lupus.  These past few months, I have been noticing my heart palpitate (and so has my doctors).  Over the last couple of weeks, the palpitations have gotten worse to the point of shortness of breath and lightheadedness when I move too much (for me) or try to walk.  I went to my Rheumatologist yesterday and he decided to check my blood pressure and pulse rates lying down, sitting and standing.  The results were as follows:

Laying Down: 103/76 Pulse 65
Sitting: 121/86 Pulse 74
Standing: 103/86 Pulse 120

I have been in the ER or hospital many times where my blood pressure (laying down) dropped under 95 Systolic and they always ask if anyone has said anything to me.  I told them no, that they (the nurses) ask me every time and I never hear anything about it again.

My grandfather and mother had heart issues.  My grandfather had several bypasses in his lifetime (he lived to 86), and my mother had a valve replacement (which was too small, and she STILL has issues).

When should I be concerned? And what should I discuss with the doctor?

[Mom2four85]

You should mention ANS (autonomic nervous system) issues to your cardiologist/EP and see what they know about it.  Some dr's are very familiar with issues and others not so much so it may take some times finding a dr familiar with it.

The bp/hr you listed show orthostatic issues; such as your HR going from 65 then 74 and up to 120 standing and then your bp dropping when you stand.  Here's some information on Dysautonomia (autonomic dysfunction) http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196 also www.ndrf.org has quite a bit of information and a patient handbook that explains things in an easy to read format.

Just a word of caution - be cautious when postural movements if you haven't you may find that you're more prone to dizziness; lightheadedness and fainting if it drops too quickly.

Not every form of dysautonomia causes every symptom, nor does every patient experience the same group of symptoms.  Some patients experience many, while others experience very few and many times we Dys patients do have crossover conditions in other areas such as AI disorders.

[Sandie_Jo]

I finally recently saw a Cardiologist, and as of a couple of days ago, he wasn't too worried, but going to perform some tests on me to be sure.  I never correlated the two before, but when I was 30 and pregnant with my last child, we developed Preeclampsia and I had to have an emergency C-Section.

My life for at the very least the last 12 years has been a downhill road health-wise because of all of this.  It has been consumed with research and trying to find the answers for my illnesses...  Hopefully I can get them soon, as I have been trying to receive disability (for all of my illnesses) for 6 years now; and been denied because ALL of my doctors (until two years ago) didn't try to explain any of my symptoms for 12 years, even though my health was continuously declining.

@Mitchfam2...  I recently found out that I'm dairy intolerant too, so I've revamped my diet yet again...  Nothing's helped so far...  Thanks for your insight though.

@Mom2four85...  Thank you for the info...  Dizziness hasn't been terrible for me IMO (Vertigo happens often, especially when I'm laying down)...  I had originally linked it to my MS, but I'm sure it's possible it's linked to that, too.  I'm getting a stress test done on Monday, so we'll see what the cardiologist comes up with.  It seems I'm getting lucky with this doctor, because he's pretty knowledgeable of MS and Lupus and heart disease...  It's only been 2 years since I've had doctors that actually listen to me, and act or react to my symptoms where dozens of other doctors completely ignored them.  It's good to know that there ARE still caring doctors out there... I just wish it didn't take me ten years to find them! ;)

[mitchfam2]

Wow! You really have a lot going on! Doctors never want to tell you this but ...you can cure yourself of these problems by going on a raw diet! there has been many that have reversed MS , lupus, thyroid problems (myself included), and the list go on! People just don't realize how much , what we put into our bodies can change everything. Gluten especially! Its a bog no no! \There problem is we are all cooking our foods to death which is reeking havoc in our bodies!  Please check out http://*******.com/. They break it down simple for you! Also they have pages of real peoples testimonies just from reversing ms. They are also on facebook if you have an account on there. Best of luck to you, you are in my prayers!

[Sandie_Jo]

The meds I take are all prescription and vitamins.  They were actually the first route I considered.  One medication in particular I started a month ago (two weeks later the palps were worse, but mind you... I had mild palps for months before this).  I called my rheumy and told him about the palps, stopped the med and saw him the following Monday.  I was still having the palps in his office, and that's when he took my pressure that I posted above.  After checking that, he had me call my PCP to tell her.  I saw her Tuesday, and the rest is what I posted earlier.

Honestly, in the back of my head, I always knew that I would probably have to deal with the heart issues since it was in my family.... I just didn't expect to get them so early - but having an autoimmune disease can do that, I guess.  I'm really nervous of the prospect of surgery since I don't have very good luck at all when it comes to that (I had an emergency c-section back in '97 that had severe complications, blood loss and two severe infections, that I believe started my road of illness that I'm on now).

Thanks for listening and responding to my post...  I really appreciate it! :)

[bbxx]

Wow, you are dealing with a LOT.
First I am wondering if you are on any meds that may cause the heart issues. If you ask the dr, most likely they wont know...you need to google the name of the drug ...do something like this... tylonal effects on heart rythm.
Just to look up the meds....
If you have regurgitaion, the degree is what matters. Mild is usually considered benign...but you have cardiomyopathy, so most likely its no benign....I hope you have a good cardiologist, because thats who you need.  I hope you are feeling better soon.

[Sandie_Jo]

Thanks for responding....  I saw my doctor yesterday, and I was having all the symptoms at her office, and she had considered hospitalizing me, but then (knowing how I hate hospitals), decided to do some more tests including an EKG and ultrasound of my heart.  My EKG was normal (no heart attack), but the ultrasound showed some problems.  She diagnosed me with Aortic Regurgitation (the same thing that my mom has) and Cardiomyopathy.  I started taking Inderol for the palpitations last night, and my doc said she's going to get me a home healthcare nurse; and told me that she's available to me 24/7.

I hope everything worked out in your favor with your appointment today... Thanks again for the advice.  Take care yourself...

[mkh9]

Hi and sorry you are going through all this.  I would get a 24 hour halter monitor and see if you have PAC's or PVC's causing the symptoms but also a stress echocardiogram and a regular one since you have a lot of family history. I'm not sure what the blood pressure changes mean. Hopefully, someone here will be able to explain that more. I would explain the same things to the doctor you talked about here, family history, and your symptoms and the other health problems you are dealing with and the blood pressure results. I have PAC's and have symptoms of chest pain, shortness of breath and tiredness, lately dizzy but it may be my toe infection. The PAC's and PVC's are benign but I'm getting an echo tomorrow to rule out mitral value prolapse or other value problems. I think you should get these things checked out too
take care,
mkh9.