Confusing tests & diagnosis

[Mom2four85]

I've had fainting spells since age 9; and been suffering off & on for about 5 - 6 years with SoB, CP; & Dizziness, exercise/exertion intolerance for 14 or 15 months.  

7/1/2009 I had an echo that showed Mild Concentric left ventricular hypertrophy and Mild Tricuspid insufficiency, Trace Mitral valve insufficiency but the Pulmonic valve was not well visualized due to a technically difficult 2D echo. Dilated left atrium with normal left atrial pressures; LV diastolic function: E/A 1.0, DT a140 msec, E' 10/cm/sec E/E' 8.  

7/6/2009 I had a stress test; that the Dr ended at 4min 55 seconds because of PVC couplets, sob, QRS segment of PVC's narrowed substantially with exercise, widening again in recovery - 180 ms to 80 ms and I passed out as she stopped it and had 1 PVC triplet in the 1 min cooldown stage recovery.

8/26/2009 I had an ablation for roughly 50,000 PVC's and non sustained VT on my 24 hr holter; which found per my EPS I have polymorphic VT, and I had a PM/ICD implanted. I had a tilt table test that showed NCS, but I don't think I have it because my BP/hr did not fluctuate until they gave me nitro - then it tanked and I had no palpable pulse or BP.

8/28/2009 My Cardiac Catherization showed non-ischemic cardiomyopathy with an ejection fraction of 40%. Hemodynamic assessments demonstrates mild systemic hypertension and moderately elevated LVEDP, no kinks, plaque, blocks or clots.

8/28/2009 Cardiac Mri - inconclusive for AVRD/ HCM

Over the past year I've progressively gotten worse until I quit all salt/fluids and meds the dr's gave me.   About 6 wks ago foot/ankle swelling started and when I lay flat some weird coughing spells.  4 cardiologists & 2 ep's all disagree on treatment and what's wrong with me so I'm a bit lost.

Thoughts or suggestions what's wrong or a course of treatment? Getting new insurance in Nov which means new doctors - suggestions?

Thank you in advance

[Mom2four85]

whoops typo city there, out sequence inconsistent sentenances bad spelling oh my :( sorry - had to check my journals to make sure of dates

8/26/2009 Tilt table test,  followed by EP Study with ablation (same day)

8/27/2009  MRI to rule out ARVD

8/28/2009 -  Cardiac Cath & PM/ICD implant

I was told no more MRI's of any kind, dr did tell me having CT"s were almost as effective in diagnosis and ok with icd's; have you checked about a PET scan? I believe that is ok also. =)   But, I have read some do have MRI's - they turn the device's off - check the icd support group [dot] org

sorry for the confusion

[PikaPika88]

I know one forum, the doctor read the responses then answered again.  He even answered the question that someone (that was me) hacked in.

Lisa, I'm curious.  Your doctor didn't mind that letting you have MRI when you're having your PM/ICD implanted?  I know,  on the website, they said "it can be done".  But, I request to have a brain MRI and all the doctors said "NO" because I have a pacemaker!  I wish to know how you convienced your doctor and get the MRI done?

[Mom2four85]

Do the doctors who answer read the followups to their responses? If so, I responded to your questions =) I know you're busy so I wanted to bump this up.

[Mom2four85]

"It seems that your heart fucntion is getting progressively worse "

could the treatment for NCS which was 7-10,000mg of sodium and fluid loading have made this worse?

I know after stopping I started to feel better and now 2 weeks later quite a bit of the swelling is gone in my feet, but still there in my ankles & abdomen.

[Mom2four85]

Thank you for replying.  

The first 2 days after ablation, my pvc's were gone,  but PAC's started and were noted in the hospital.  Within 2 months, I had tons of pvc's again along with the pac's.  By month 4, my EP said I needed another ablation and changed my meds to try and prolong the need for the other ablation. So it was a watch and wait situation.

I still suffer bouts of VT where my icd paces me back to NSR.   I've had my PM changed quite a few times trying to get the right settings, and they think my leads are fractured/leaking due to loss of capture, which I will find out next month if they're still above 1000 ohms. My last visit in April 2010, I was only being paced 10% which they said was fine - but my rate response was off so they changed it.

how do I pin down a firm diagnosis of what's wrong with me? I still do not have a clear dx or cause of what's wrong; just doctor's treating symtpoms

[Cleveland Clinic]

How did you do after the PVC's were ablated?  Are there still any PVC's left?  It seems that your heart fucntion is getting progressively worse and there isn't any coronary or valvular heart disease.  If the PVC's are truely eliminated, I would suggesting getting started on ACE inhibitors and beta blockers.  They can help a lot.  You already have a defibrillator so the syncope if from bradycardia in the setting of beta blocker use should be prevented.  Make sure that the pacer/defibriilator isn't pacing you much.  In some cases it is known to cause worsening cardiomyopathy caused by dyssynchronus LV contraction.  

[Mom2four85]

a follow up question:  

Could Phentermine HCL have caused Polymorphic VT or any of these symptoms? I ask because I was prescrirbed this from Nov 21, 2008 - Jan 17, 2009 and got not long after taking this medicine and by June 2009 is when they found 50,000 pvc's and the other problems.