Back in hospital trying to get proper testing...

[ZRHONDA]

I find myself back in th hospital after being discharged just 3 days ago. I have pulmonary edema and congestive heart failure. My PTINR are not therapuetic and they are bridging me with Lovenox. I had my first migraine since my stroke back in 2011 when I started on Warfarin. I panicked a little as it felt like I was stroking out. They refuse to test me forAPS. I will try to get my theme oncologist on board. They scanned me for clots and did a CT with contrast to rule out a PE.ALL NEGATIVE SO FAR BUT IM STILL BEING TREATED FOR DOUBLE PNEUMONIA.. I hope I can get my heme/oncologist on board. Having the migraine freaked me out. I used to have migraines 3 to 4 times a week before I started warfarin. Now I never have headaches at all. Can someone please remind me what tests to ask for? The edema is insane and even with IV Lasix. I'm worried about the micro embolism I've heard some of you talk about. I'm in a great deal of pain and need some help in knowing what to ask for testing wise...please help me if you can. Thank you all. I appreciate any and all help you can provide..

[ZRHONDA]

Thank you so much for your help. It is truly appreciated.

[MaryF Administrator in reply to ZRHONDA]

Those tests are useful to repeat, do get them done, and Hughes Syndrome/APS does not go away, so if you are in a phase of negative test results it does not mean you do not have it. Do also get your thyroid, B12, D and iron looked at also. MaryF

[ZRHONDA]

I do have Lupus anticoagulant as well as SLE. I ALSO HAVE FACTOR 5 linden thrombosis. I don't know how that figures in if at all. I just keep going into heart failure and swelling up three times my normal size. Just want to get to the bottom of it all... thanks again for your your input.

[ZRHONDA in reply to ZRHONDA]

Oops factor 5 lieden thrombophelia

[Lure2]

If you have got micro-embolies they are not often (if at all) seen on a Scan. Mine are never seen on a Scan. I have now Pulmonary Hypertension.

Get a Specialist of APS and he will most probably know also about Factor V leiden and SLE. Get control of your bloodpressure if it is high.

Good Luck from Kerstin in Stockholm

[ZRHONDA]

Thank you, I am a big fan of your expertise!

[Hughes-Comrade]

I'm sorry to hear of your health problems. I hope you can get a few things worked out. Factor V leiden is another clotting issue. You may wish to ask if it is a single or double parent. Single is better than from both parents.

xx

[ZRHONDA in reply to Hughes-Comrade]

It has been confirmed to to be heterozygous which I assume is from my father only? Is that correct?.

[Hughes-Comrade in reply to ZRHONDA]

"Factor V Leiden is the name of a specific gene mutation in the F5 gene. This gene plays a critical role in the normal formation of blood clots in response to an injury. People can inherit one or two copies of the factor V Leiden gene mutation. Those who inherit one copy are called heterozygotes. People who inherit two copies of the mutation, one from each parent, are called homozygotes."

Credit to:

rarediseases.info.nih.gov/d...

[Hughes-Comrade in reply to ZRHONDA]

From one parent, not sure which one. Look for matching medical issues.

[ZRHONDA in reply to ZRHONDA]

Thank you all for your help and education. You all are so knowledgeable. I really appreciate your input.