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Forum Name: Valvular Heart Diseases

Question: Desperate for diagnosis


 itsmethere - Tue Jan 31, 2006 10:58 pm

I am a 21 year old female and I have been having my symptoms since age 9. I have been having really severe and debilitating shortness of breath combined with chest pain, fatigue and even diziness (when my symptoms are at their peak) for all these years. My limbs also get cold and I begin to urinate more frequently. These symptoms last for days at a time and vary in intensity throughout their span. They are so bad that I am scared of dying. They seem to be coming from the heart. I have had some periods where I am constantly bothered by my symptoms and then periods when I am symptom free for three months at a time. Between age 15 and 17 my symptoms seemed to have receded but then reappeared again. Ages 12-14 were particularly bad and so have been the past three years. I had even lost my first-year of college because I was feeling so bad and was scared of dying.

I was so scared that I did not tell my family about these problems until age 12 at which point I started going to cardiologists. Over the past nine years, I have seen a total of four cardiologists and had all the standard noninvasive, office-based tests done repetitively multiple times. I was also seen at an emergency room three times at the time of my symptoms. The doctors do not find anything that concerns them with my heart. My EKGs are normal, my echos(standard through the chest wall) show trace mitral and tricuspid valve regurge but they seem to be within the normal range and the doctors are not alarmed. I also have a small PFO but this is again a normal finding. My 24 hour monitor showed extra beats but I was also told that this isn't a concern. My chest x-ray is normal. Could it be that my echos underestimate the extent of my valve regurge, for instance, and that I do have a heart problem? I am trully feeling really bad and I do not believe that it's of a psychological origin (I have tried psych medication) and have always had a strong feeling that something may be wrong with my heart. Do you have any ideas of what it can be and how I should proceed? Thanks.
 Dr. A. Madia - Wed Feb 01, 2006 1:41 am

User avatar Hi

Echo can not underestimate valve disease and you need to be reassured that you do not have any heart problem at all.

This could be two things. One is anxiety neurosis, but first I would suggest you get tested for GERD. [Gastro Esophageal Reflux]. which is easily treatable with antacids and prokinetics.

Dr. A. Madia>
 rmaco - Fri Feb 03, 2006 9:21 pm

I am have a pfo closed next week and I have had symptoms almost identical to yours. I would suggest pursuing the pfo to find out how big it is and possibly having it closed through a catheter. You can come join our group on yahoo anytime if you would like to talk to some more people that have gone through this. It's at http://health.groups.yahoo.com/group/PFOSupport/

Good luck,
Dirk
 itsmethere - Mon Feb 06, 2006 7:22 am

My PFO is estimated to be 4mm through the regular chest-wall echo (I remember reading the report) and it has left to right shunting (not sure if I got the direction correct).

For some reason, I am more concerned that I may have a valve problem than with the PFO. After all, PFO can be closed with a catheter. From what I've read on the internet and from what the doctors have told me, PFO cannot cause such horrible shortness of breath, chest pain, fatigue, etc.

As for my valve, all echoes notice trivial mitral regurge. I remember that one (I did not see all my echo reports because some doctors don't give them out) said "trivial mitral regurgitation noted, a variation of normal. The valve closed in a somewhat flattened fashion but did not prolapse". Apparently, the last cardio that I have seen, after looking at my past echo reports in the hospital system said that I have trace tricuspid regurge too. As I realize, the mitral regurge is usually more significant, especially since it, along with the PFO, are the consistent findings on all the studies. However, since everything looks mild, the doctors dismiss my symptoms and believe that none of these findings can cause them. I am very scared, that I may need to have an open heart surgery at the end, and about the consequences, especially given how long my heart may have been compromised.

I realize I sound neurotic, but I have been having TRULLY DISTURBING symtoms for nearly twelve years and actually am having them right now. Could anyone suggest what's best to do in this situation and whether I should insist on invasive testing (which was never done before) such as the TEE. I am actually scared of having it. Can mitral regurge or the PFO cause incapacitating and prolonged shortness of breath, chest pain, fatigue, etc? Can a TEE reveal something that the regular echo either underestimates or doesn't pick up?

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