Multiple kinds of arrhythmias and possible connective tissue disease.

[Mr. J.]

Hi,

I've posted before but it's been a while.  I do not have space to give you full history and still get to my questions so here is a short version.  For 4 yrs. I have had some type of suspected but undiagnosed disorder that acts like a connective tissue disease.  I have had much testing but all bloodwork is normal (inflammation, antibodies, etc.).  I have many symptoms but the ongoing ones have been: reduced blood flow to my hands and feet (and other areas), increased heart rate, and worsening heart arrythmias.

I have been diagnosed with "atypical raynauds" (atypical because it is constant), a "hyperdynamic heart" for which I am taking Toprol, and over 12 different TYPES of arrhythmias (both atrial and ventricular - even NSVT).  These three symptoms started at precisely the same time four yrs. ago so I believe they are connected.  Most recent heart tests (all normal) have been:  stress test (6/05), echo (5/04), nuclear scan (about 3 yrs. ago).

My arrhythmias are typically brief (90% are less than 10-15 seconds long) and paroxysmal.  But, they are getting more frequent over time and longer too.

Questions:  1) Theoretically, can you seen any possible connection between the arrhythmias and my other vascular symptoms?  2) Do "paroxysmal" arrhythmias carry any significance?  3)What is the best test for "microvascular ischemia"?  4) What is a cardiac MRI and would that be helpful?  5)Are worsening arrhythmias more likely to indicate a seroius cause?  6)Are many type of arrhtymias in one person more likely to indicate a serious cause?  7) What should I do?

Thanks.

[sptpr]

I had a question regarding your comment of a "hyperdynamic heart".  I had an echo done in March of 2003 and everything was completely normal; however, the tech indicated that my heart was very "hyperdynamic" and said that it beats very strong.  I was concerned at first when she said that because I thought it was something bad.  I originally became involved in heart procedures in November 2000 when I experienced a 48hr bug where I had a very high fever over the weekend and then I woke up on Monday morning with chest discomfort and went to the ER.  They did an EKG which was normal and a series of blood tests, one of which was for Troponin.  That test was elevated so they thought I may have had a cardiac event, so they did a stress echo, which the doctor said was absolutely beautiful.  He could not find anything wrong despite all the testing and believed it was a false positive.  I was released and strangely started to become aware of my heart beating constantly.  I went back to my family doctor and they did an EKG and it showed a flipped t-wave (i don't where on the EKG) and they sent me right to the hospital.  I stayed there for two days, during which time I was hooked up to a heart monitor which never showed anything of concern and I had a nuclear stress test, another echo (at rest) blood work and an x-ray.  Everything was completely normal and I became extremely upset over this whole ordeal and was concerned I contracted something bad.  My cardiologist suggested I have a heart-catherterization the following week and he gave me 25mg of Atenolol to calm my nerves.  I had the heart cath done and it indicated that my heart was completely normal with an EF of69, which they said was about as high as it could go.  By the way I was 29 yrs old at the time and very much into bodybuilding and never had any episode like this prior in my life.  The interesting thing was, after the heart catherterization I went home that evening and felt my heart pounding so hard it was going to come out my chest and my heart rate was probably about 60 bpm.  I don't know if the heart cath caused any problems, but to this day I have been  plagued with constant palpatations, pounding heart beats, etc.  Any little thing I do seems to excite my heart.  After my catheter I went to see about 15 other cardiologists, who conducted an EKG but would not keep repeating the same tests over and over just to ease my anxiety.  I went to see an EP in March of 2003, who did an echo and a holter and said everything was completely normal despite my sypmtoms.  I continued to lift heavy weights and never once had any complications from my workouts.  I just have to deal with not being able to stop feeling my heart beat and it creates alot of stress on me.  I recently saw another cardiologist in the past year who reviewed my records and didn't have anymore options.  I did develop what I believe are PVCs which started around 2004 and were extremely infrequent.  They felt like a thump in my chest and I would get one or two maybe a day and they it went away for 4-5 months before coming back slightly more frequently but then they would stop.  I just went to see this same cardiologist because of having PVCs everday after doing a heavy leg workout.  Again, I feel everything and from what I could feel they were occuring several times a day and have made me extremely anxious.  I just completed another holter (24hr) over the weekend and am waiting for those results.  The Dr. also set me up for another stress echo, I think to calm fears.  He really believes that I am very healthful as well as my heart and doesn't know what happened to me back in 2000 that set all this in motion.  He did mention that my emotions are hard-wired into my phsyiology and maybe the trauma of all this has somehow stuck with me subconsciously and now I am aware of every beat which has become unbearable.  One internist I saw suspected I may have suffered from pericarditis and now  I am possibly having residual effects of the condition.  He thought that based on the fact that I was sick over the weekend and then suddenly had chest discomfort.  I have been on the internet a multitude of times and I think it doesn more harm than good because I read every kind of symptom and think I have the condition.  I have been very worried about cardiomyopathy and heart failure because of the concern that might heart is working hard.  Every cardiologist has said that my test results have shown a very healthy, normal structured heart that has not been "damaged" or "weakened" at least up to my last echo in 2003.  No doctor would give me any medications because the EPs did not find anything  pathological and they were not about to just give me medication because I wanted it.  I'm concerned these doctors are all causing my desmise and making my heart fail because they don't want to do anything.  My wife thinks I'm absolutely crazy because she can't believe how many doctors I've been too and they all same the same thing, that I am fine.  I don't know if it's really me or what the hell is going on.

[AlisonInCanada]

Mr. J,
Anyone who has (or suspects they have) an autoimmune, connective tissue, or other chronic disease should have their D-Metabolites checked.  It's a simple blood test.

Please research the Marshall Protocal ( http://www.marshallprotocol.com ) for more information.  

I think you will find the research and curative therapy discussed there very interesting.

Good luck to all,
Alison

P.S. I am in no way associated with (or receive benefit from) the Autoimmune Research Foundation that is sponsoring the research being conducted with regard to the Marshall Protocol.  I simply see promise in this cutting-edge medical technology and it's potential to provide recovery to millions of people world-wide.

[Mr. J.]

Thanks ChildrenTreasures, Upbeat63, Woodruff,and Tickertock -

I appreciate your comments and feedback.

Kelly, you mentioned the dreaded "anxiety" explanation that doctors sometimes point to for undiagnosed medical problems.  I have heard this offered more than once by doctors and it is very frustrating to have a legitimate illness and be told that what you are experiencing is due to anxiety.  I know many people do suffer from anxiety and it must certainly be considered by doctors but just because someone has a difficult-to-diagnose medical condition does not mean their problems are due to anxiety.  Similarly, just because someone is anxious, does not mean they cannot actually be sick too!  So, I agree with what you are saying.  I am glad you got a diagnosis.  I have had my thyroid checked many times and it is always "normal."

Upbeat63, I appreciate what you are saying.  However, part of the problem I believe is that we expect doctors to have all the answers because they do not often tell us that they do not have all the answers!  And I will keep pursuing answers - I really hvae no choice.  The hard part is trying to walk that fine line between living life and being consumed by the sickness.  In some respects, having a "name" for what is wrong with me would help me live life better.

Woodruff and Tickertock - Thanks for letting me know about your CTD's.  I actually did do a little research and you are right Woodruff, some of those symptoms do fit.  But I really have no arthritis-like symptoms now (although I did for a time when this all started four years ago).  It is like I have bits and pieces of several CTD's but none of them are really a good "fit" when I read the symptoms.

Thanks everyone for your comments.  Take care and I will hopefully talk to you later.....Mr. J.

[upbeat63]

Hello, Sorry to hear that you are having so many things going on. I hope it helps you to hear and to know that you have had so many "normal" cardiac tests. The maddening thing is, arrythymias can increase in frequency without any cause. I too have occassional bouts of nsvt with my very high PVCs (20,000+/day), but I keep hearing and reading that infrequent nsvt is ok in "the presence of a structurally normal heart".

Although, normal just means inside the little box (reference range) "they" have defined as being ok.

Since we are all individuals some of us can be inside that little box defined as normal range, but still experience symptoms that the doctors scratch their heads over.

We want doctors to be "demi-gods"--to know all the answers and provide the treatments to get us better, and sometimes we expect guarantees. Some of them try very hard to live up to that high standard, and I think that is why some of them won't admit, doctors DON'T have all the answers.

They have just gone through a whole lot of school and training to try and figure out the human condition. It's us who think there should always be an answer, when science may not have caught up to that thinking yet. Science is dynamic and changing. So keep looking for answers, don't give up, but you may have to be patient.

[childrenrtreasures]

I was without a diagnosis a year ago and I was very ill (symptomatically I mean...I wasn't in any imminent danger). It's extremely frustrating!! I can't say that I would choose any illness over any other...they're all crummy in their own way...chronic illness may not be "life threatening" but many who suffer with it often wish it was. Chronic illness tends to eat away at a person's resolve and determination. I often wonder if the symptom of "depression" that so commonly occurs with chronic illness is truly a "symptom" or simply a result!

I was found to have Hashimoto's thyroiditis (if you haven't had your thyroid antibodies tested you should; thyroid dysfunction does not always show up in the lab work when antibodies are present). Because of unrelenting symptoms with treatment my OB suggested that I may have a condition that medical science has no means of testing for (I was seeing an OB because of recurrent miscarriages).

Unfortunately I don't believe I'm alone...many people plod on with chronic illness and never know the "cause". Their condition is blamed on depression, anxiety, stress etc...It's sad that more drs don't admit that they don't have all the answers. Instead of confessing that allopathic medicine (and all the alternatives) has it's limits many blame the patient!

Before I was diagnosed my PCP said that although I seemed chipper at my appts he wondered if maybe I was suffering from some type of depression...as if I had mustered up the cheerfulness just for him! I have had a plethora of drs, friends and family tell me that maybe it's because I've had 5 children and homeschool...so homeschooling moms of large families are more prone to chronic illness?? Is there medical literature to support this (*sarcasm*)? Then I had two rheumatologists tell me that I definitely had nothing autoimmune and that I was suffering from a "hypersensitivity pain disorder". Oddly this disorder doesn't seem to really exist (did a search on it) outside of the psychosomatic realm. They insisted however it was a classification of illnesses of which fibromyalgia is included. I don't have enough diagnosing criteria for fibro or any of the other illnesses classified under that label though.

When it was discovered that I had thyroid antibodies (I had to request the test) I was actually thrilled to finally have some answers. Treatment has helped for the most part.

I hope you're able to find answers soon! Don't give up...keep searching.

Kelly

[woodruff]

I would suppose you have been worked up for seronegative spondyloarthropathy?  I ask because several years ago, I eventually got this diagnosis after developing weird arthritis-like symptoms following a bout of severe food poisoning.  Nothing ever showed up in the blood marker department, but I was ill.  My rheumatologist eventually called it "reactive arthritis," which is the politically-correct name for Reiter's Syndrome (Dr. Reiter did bad things in the Death Camps).

Reiter's/Reactive arthritis has been linked to several of your symptoms.  You might want to google the term(s), and look at a site called The Road Back.  There are some fruitcake-ish ideas there, but some useful ones, also.

[woodruff]

I was HLA-B27 negative, and my case has turned out not to be too severe, at least at this point.

[tickertock]

AS a side note 90% of persons diagnosed with ankylosing spondylitis are HLA-B27 positive and about 80-85% diagnosed with Reiters syndrome/ reactive arthritis as it is now called are HLA-B 27 postive, but even you are not HLA-B27 positive you can still have either of these connective tissue diseases.

I have a first cousin who was diagnosed about a year ago with sarcoidosis also.THis HLA-B27 gene apparently makes you more susceptible to developing some of these CTDs.

[tickertock]

I have been diagnosed ankylosing spondylitis and my brother has Reiter's syndrome we are both HLA-B 27 positive, while in general neither of these 2 connective tissue diseases are life threatening the symptoms they cause can be debilitating times.

Good luck with getting a diagnosis.

[Mr. J.]

Thanks Dr. and Tickertock for your responses,

Yes, Doc, I am thankful that my condition is not worse.  But I am still very concerned because over time the heart arrhythmias are getting more frequent and I am having more longer ones (although still most of them are very short).  The frustrating part for me is that the rheumatologists cannot figure out what is wrong with me.  And in the absence of a diagnosis of a specific underlying disease the cardiologists do not think too much of the arrhythmias when they see them on the tracings.  I should have asked you one more question if I could have squeezed it in somehow.  That question would have been "Do you believe there exist un-named yet legitimate organic diseases or disorders that defy medical testing?"  I would think the answer to this question would be yes, but I'd like to hear what a doctor has to say about it.

Tickertock - Thanks for your response.  I know we have talked before.  What kind of CTD do you have?  Does yours have a name?  I would definitely vote for the "life altering" option before the "life threatening" option!  I am just concerned because the arrhythmias get worse over time.  By worse, I mean they are becoming more frequent, are lasting longer, and the variety of them seems to be increasing.  Two years ago I wore a monitor and they mostly caught SVT, sinus tach, and some PVC's and PAC's.  Then last year I wore the monitor and they caught over a dozen different kinds of arrhythmias (including the dreaded NSVT).  I am really worried that either microvascular ischemia or scarring of the heart could be causing my problems.  There was one time when I had just a few seconds of minor chest pain and light headedness but that was 6 months ago and was very fleeting...so who knows.  If it were ischemia though you would think that it would act up significantly when I exercise.  I sometimes get some palpitations when I exercise but most times I do not.  It is very hard for me because I don't know what I am dealing with.  Thanks for listening and hope to talk to you more!

Have a great weekend everyone!....Mr. J.

[tickertock]

These are great questions, I myself has been diagnosed with a connective tissue disease and is experinecing an onset of a different type of arrhythmia, but its so fleeting . I have been told by my cardio that people with CTDs are more prone to arrhythmias and palpitations. There are different types of CTD, some are associated with causing electrical and conduction problems in the heart more than others but many of them overlap and some people have more than one, these are referred to mixed connective tissue disease. From experience I can tell you that CTDs are very life altering, though most are rarely life threatening.

[Cleveland Clinic]

Mr. J

Sorry to hear of the long course of your symptoms and some of the frustrations involved.

1) Theoretically, can you seen any possible connection between the arrhythmias and my other vascular symptoms?

Its possible. Without fully understanding what disease process you have its really impossible to tell.

2) Do "paroxysmal" arrhythmias carry any significance?

With a fully negative cardiac workup, not much other than the symptoms and worry they cause you.

3)What is the best test for "microvascular ischemia"?

What youve had is essentially it as far as cardiac evaluation goes.  If there is a high suspicion your physician may wish to treat you symptoms empirically as they are with your Toprol. Some others receive relief with calcium channel blockers.

4) What is a cardiac MRI and would that be helpful?

Its another imaging modality to look at the heart.  I cant see how this would lend too much to your current evaluation.

5)Are worsening arrhythmias more likely to indicate a seroius cause?

Although, Im not sure exactly what you mean by getting worse, with the rest of your cardiac evaluation turning up nothing, probably not. It should be followed with your physician.

6)Are many type of arrhtymias in one person more likely to indicate a serious cause?

No.

7) What should I do?

Be thankful that what ever disease process you might have has followed a relatively benign course thus far. Hoepfully, this portends a better diagnosis.  Some CTD move rapidly and can be completely debilitating over a short course.  If you havent had formal evaluation from a rhuematologist, I would probably seek that type of input. Otherwise, continue your care and followup with your physicians who have followed you thus far.

good luck