Unknown reason for PE

[rroniger]

Back in December, I had 2 episodes that led me to the hospital, and ultimately, was diagnosed with a PE.  After further testing, there was nothing revealed that showed the cause.  I was therapeutic on Coumadin when I had another episode which revealed another PE about a month later.  As far as I know, they have run every known test which all come back negative.  Every scan that has been run reveal no DVT.  I have been placed on Lovenox indefinitely and had an IVC filter put in (even though they are not sure where the emboli are coming from).  Are there any other tests I can inquire about?  Is it common to have a PE with no evidence of a DVT?  Am I realisticly looking at Lovenox for the rest of my life?  I am a 32 year old male with no prior history and according to the doctors in good health.  A few women on my mother's side have had DVT's around childbirth, but to my knowledge, noone has shown any genetic predisposition that can be identified.

[Sunny602]

Boy can I identify with you! I too have had a PE without any real reason for it and have been on coumadin since (for 3 years now) and my levels yo yo too. One week it will be too low and my dosage has to go up, the next it will be through the roof and I have to stop it or decrease the dose. It is maddening. I have been going through this ever since I was put on coumadin. Most people that I know only need their levels drawn monthly without too many changes. Not me...I get weekly draws because my levels are so labile. When I am fighting an infection, my levels get out of whack....my INR's have been as high as 9! Anytime I am coming down with something, I know to get my levels checked because they climb so high.
I understand your fear about getting a stroke or hemmorhaging. How often do you get your levels checked?
If you ever want to chat, just email me. I am 36....Sunny

[tooyoung975]

In June of this year I ended up in the ER with a  swollen left hand. I was not sure what the cause of it  was.  My reason for going to see an Md was because it became very uncomfortable. I assumed it might be an infection from a insect bite or something. While waiting in the ER to see a doc. My entire left arm became numb and cold. The rest of my body was very warm. The docs became concerned and decided to run a few tests. During my time there, the following  tests  were done: X-Rays, Cat scans, MRI, Dopplers of my legs. It was at that point the PE was found. They discovered 2 blood clots in my lungs. I was immediately put on Heparin and admitted. From my  ER visit I ended up being there for 5 days. Within those days I had several other tests done. More MRIs, 2 types echocardigrams, More Doppler studies of my legs and arms.More Cat scans. Plenty of blood tests. I was sent home with a prescription for Warfarin and given instructions. The cause for my  PE was never found. I am having lots of trouble keeping my INR level stable. My doctor has been decreasing and increasing the dosage.
Im scared that while trying to regulate my levels , I may be at a higher risk for either getting a stroke or hemmoraging. What should I do In my case?

Oh, I'm only 35 yrs old.