First of all, Enko, I want to tell you, YOUR ENGLISH IS GREAT!!!!!   You've worked VERY harda studying, I can tell!!   Congratulations!!

Now, on to the heart issues.   Masto does indeed cause some heart issues, but it's not known to cause SERIOUS heart damage.  Yes, the mediators affect the heart and most of us have arrhythmias namely being tacchycardia.  However, there are no studies into what exactly mastocytosis does to the heart function yet.  In this respect, our doctors are blind and have nothing to lead them on.  

So, what do they do?   They treat the symptoms.   By taking antihistamines, leukotreine blockers and mast cell mediators, they help to reduce some of the effects of the mediators which the mast cells put out.   What is left over our cardiologists put us on ACE inhibitors and other heart medication.  Although most doctors want to put us on beta blockers this is contra-indicated because if you were to need epinephine, the beta blockers interfere with the epinephrine and make it less effective I believe, thus it puts your life into danger when you are already in danger with anaphylaxis.   So, this is why most of us are on ACE inhibitors instead.

I hope this helps, Enko!

Lisa

Hi Enko,

I too am awaiting diagnosis..

I have occasional bouts of tachycardia and also have been diagnosed with Mitral Valve.

I don't know that there is any relation between the masto and the MVP... we're all so different .. who knows?

Hi Enko..

I was diagnosed years ago and yes w/ regurg...

Do not have a new cardiologist where I live now.  Went to the ER for chest pain and breathing issues last year (now thinking maybe masto related) they found nothing..ekg and stress test were normal.. but they kept me all day because my BP and respiratory was elevated.

Went to a local cardiologist for follow up who said, without any testing at all mind you, that he didn't believe I had MVP.. So I left his officer never to return .

What would a 24h Holter EKG do/show?

Thanks E!!

When I find a new Cardiologist I will request.. for now I was thinking I might pick up a portable BP / pulse monitor..

No my doc years ago said I didn't need any therapy for my MVP..

I used to have low BP, a couple of faiting spells, dizziness etc... the last few times I've had it taken it's been a little  high.. which would explain why I dont' get the dizziness on standing etc anymore, but now I"m concerned because it's a little high..

Used to be 110/60, now 138/90...

I will get the monitor and try to track as you suggest.

Thanks Enko...

You've given me a few more things to add to my to do list.

I've got a month to wait for my biopsy results to come back from Hopkins, AND, I've met all of my out of pocket expenses for 2011 for my medical insurance, so I might as well get everything checked on while ht won't cost be anything.

Thank you for all of your advice!!

Is there someone who maybe could at least partially interpret my new Holter EKG results?

Max HR: 173 (03:51 PM)
Min HR: 42 (03:53 AM)

Missed beats: 1 at 04:18 AM, RR= 1615 ms

SUPRAVENTRICULAR EVENTS:
ECTOPIC BEATS:
Isolated: 45
Couplets: 55 (0.1%)
Runs: 1
Total: 158
TACHYCARDIA: 7
Total duration: 07:31
RR INSTABILITY: 1
Total duration: 01:47 at 03:53 AM

Comments:
Basic rhythm is sinus, with frequency from 42 to 173/min, 75 in average. During the sleep there are multiple appearances of A-V block of II. degree Wenckebach and Mobitz II; at 03:53 total A-V block with A-V dissociation and ventricular frequency 55/min.


At the bottom there's also a remark that I should report to my cardiologist, and the nurse that was giving me test results said that I need to go ASAP and referred me to second nurse. The second nurse said the same thing and referred me to the third nurse. Third nurse said (again!) the same and said that my doctor is at the moment at ICU and that I should go and see him. At the end, after 5 HOURS OF WAITING(!) I didn't manage to get to him! Nurses that work there said that he'll be in tomorrow and to come back then. Aaargh.. My poor nerves.. and I can bet that he'll tell me that there's nothing to worry about, he did the same last time.