My New Hematologist's update for me.

[dar58]

I saw my new DR at the Yale NewHaven clinic in CT last week. She ran all the tests to confirm all my dx's. She ran some other tests also. I just received a message to make an appt to come back in, so will call tomorrow. These were her results:

Beta2 Glycoprotein 1 IGM 46.9 cu

Anticardiolipin IGM 43.7

Dilute Viper Venom 1.55

eGFR for CKD Chronic Kidney Disease 51 ml (Stage 3A Chronic Kidney Disease)

ANA + 1.3

There were many other tests some are still not back, but at least now we are getting somewhere.

If anyone could clarify some of the meaning of these results I would appreciate it. I tried google but got very confused with some wording. I know you are not Physicians and cannot give diagnosis but these tests were just to confirm everything I have been going through. Thanks everyone.

[dar58]

Beta-2 Glycoprotein 1 IgM46.9 CU<=20.0 CU

Reference Range for Beta-2 Glycoprotein 1 Antibody, IgM is:

<=20 CU = Negative

>20 CU = Positive

Anticardiolipin IgM43.7 CU<=20.0 CU

Reference Range for Cardiolipin Antibody, IgM is:

<= 20.0 CU = Negative

> 20.0 CU = Positive

Dilute Viper Venom Time1.55 <1.21

eGFR (NON African-American)51 mL/min/1.73m2>60 mL/min/1.73m2

Values under 60mL/min/1.73m2 may indicate CKD

This is whats on the report. Thanks ApsNotFab

[dar58]

This is is the 4th time tested since 2008. I expected it yes. I do not know how it is where you are from, but here in the USA its really hard for Drs to accept that you have APS. The only thing different now is my numbers are higher and my eGFR for kidney disease is lower so my kidneys aren't working like they should be. On the scale here of CKD I am a level 3a. The levels are 1-5 with 3 being 2 different ones a and b. One is the beginning stages and 5 being kidney failure. I now see a hematologist/oncologist who accepts APS dx and actually is doing conferences regarding patients and research. I went today to have my INR done, she was not in this office today, and we can't seem to get my INR quite on target since being in the hospital in December. I will be seeing her soon but have capabilities of emails with her which I did send today. I also asked her about needing a referral to get my daughter tested, her insurances is not accepted everywhere. My daughter is 35 and has like her mom, a few different auto-immune issues and has had 1 DVT in the past but was never tested. So I look forward to hearing back from her. Do you know anything about the kidneys being hurt due to APS? This is pretty new to me concerning my kidneys. Thanks for your help.

[Lure2]

APS can attack almost every organ in our body. There are often tiny clots that are not seen on a Scan of today but do damage to our body. We have too thick blood with this illness that has to be properly anticoagulated and on a stable level.

Try to read as much as you can about APS and you may have easier to put the right questions to your Specialist. Hope he then can answer your questions but if he knows APS it should not be a problem.

If you are on Warfarin could you ask if you could selftest as for me it is the only way to keep the INR within my therapeutic range.

Good Luck from Kerstin in Stockholm

[dar58]

Thanks so much ladies for all your info. APSnotFab, thank you for those Brilliant and informative pages. I will share with my Doctor, thanks again.

[Debbweb01]

I wish u a Happy Healthy Holiday DAR! Good luck with ur troubles! I'm done here with docs! I go to Hemotologist and no one else! Done don't want to know about anymore autoimmune diseases! I've had it in about to have a mental breakdown! My hubby in hospital! He passed out at cemetary wen we wen Psalm Sunday to put special Psalm cross there! We never made it! Jesse wanted him in hospital to b taken care of! Hosp far from home! DAR I want to throw in the towel! I'm very tired! I can't do it anymore! I pray ur kidneys stay ok! Bless You!

[dar58 in reply to Debbweb01]

Aww.Honey, I am so sorry you are going through all this. I know about wanting to throw  in the towel and sick of Drs and hospitls and meds. Whenever I get excited that things are looking up, there is more crap happening. Last Friday and throughout the weekend, was so weird, I slpet constantly and whenever I woke up my legs were weak, muscles tight, just very lethargic. Monday Manny took me to the DRs., she ran all kinds of tests. One test came back a highly positive. I have Epstein Barr Mono. Now, where the heck did I get this one? This morning about 5, I couldn't take the pain in my head (i am not a headachy person) and pain again right upper abdomen. They did a CT scan of my head and belly. My head is painful because all the lymphnodes in my neck and back of head are swollen and my belly has had another bleed..sobeit a much smaller one. I like you are just so damn sick of it all. I am really sorry you are going through all this and also because we haven't been chatting. So much bad news all the time, my eyes, surgery now my kidney and then this.I will say extra prayers for you and hubby. Love ya my  friend.