Recently diagnosed with Primary APS

[kbmis003]

Do not know how long I have had this.  I did have a few early miscarriages in the first 2 months of my pregnancies.  Almost miscarried my oldest son in the first three weeks of pregnancy and had pre-eclampsia during my pregnancy with him. He is now 29 years old.  My blood pressure was high with both of my pregnancies.  I have another son 25 years old.  I am now 60 years old and I was told to take an aspirin everyday for the rest of my life and that at some point I would have a blood clot occur to my lungs, heart, or brain.  In 1992 I thought I had MS because my legs would become numb at night in bed and I would have a numbness and tingling sensation when I exercised.  But, it was not MS.  Did not know then it could be related to APS.  I live in Texas (Austin - San Antonio Area).  I am searching for an APS specialist.  Would anyone know of one in this area?  The Doctors I see do not seem to have a lot of experience with APS because they are constantly referring to the internet when I asked them questions.  Also, I would like to know from those of you who were diagnosed with Primary APS, who have not had a major blood clot at the time of diagnosis, what to expect as time moves on and if there are any other treatments other than aspirin?  I am taking the supplements curcumin, resveratrol, and Omega 3.

I have my MPH and I am interested in any research that is being conducted on APS.  APS had not been discovered at the time I was a student.  

[MaryF Administrator]

Hi there and welcome, you will find quite a few on here with Hughes Syndrome/APS from the USA, and lots of people on here have a similar background, history wise etc.  There are some names on here, who could be contacted, but for more localized knowledge regarding specialists, other members will be useful to you.   I am sure you will get some answers:   apsaction.com/  and there is lots of information on the charity website for Hughes Syndrome Foundation, which also has many useful books listed.  hughes-syndrome.org/

MaryF

[kbmis003 in reply to MaryF]

I was diagnosed from lab tests and my history.  Two of the tests that came back positive were B2 Glycoprotein I (IGM) AB:  result 102  and Cardiolipin AB (IGM):  result 51     Are these results considered very high?  If not, what type of results would be considered high?   Do they tell us any more about where we are in the disease process other than that we have APS.  If possible, could you comment on what you know about these tests?  Are other tests being used in your area?   

[MaryF Administrator in reply to kbmis003]

Hi, it is very important that you go through these results with the doctor who ordered them as of course we do not give medical advice on here:   For any tests reference ranges and labs and vary!!!  Do arrange an appointment to talk about it!   mayomedicallaboratories.com...

mayomedicallaboratories.com...

MaryF

[kbmis003 in reply to MaryF]

I don't see my first reply to you.  It was a thank you for your quick response and that the information you gave me was very helpful.  I apologize if I asked the wrong questions in my second reply. I am not expecting medical advice specifically for me.   I really just want to understand more about the tests.  Your monthly blog about the twins was very interesting. 

[Debbweb01]

Hi Texas been there twice and in from Long Island , New York! I just went on a website called APS or Hughes Syndrome USA! They have is listed in State order! There are many in NYC, but only one on Long Island! I just came from that site! Been to NYC and that rout too much money and traveling expense! Do u live near a big city??? Oh yes Austin San Antonio area! You must find a specialist in APS and make a phone call to doctors nurse and ask if that Doctor knows about AOS??? Some don't as u can read from my angry posts what we go thru her in our Beloved Obama AMERICA! I lost my left leg due to misdiagnosed APS! Was diagnosed with MS and fibromyalgia years ago, never tuk what they said seriously! I had pre eclampsia too in my one pregnancy and delivered a 8 monts a 7 pound beautiful baby boy, only to have him pass at the age of 24 in a hunting accident!!! I'd loose my legs my arms my life to have him back! I miss him most dearly! I can't impress on you enough to see an APS SPECIALIST! I also reccomend a hood written by Kay Thackery called Sticky Blood! That's what we have and we won't feel better unless our INR is between 3 and 4! A fight I've been fighting since 6 months of my diagnosis and being in hi doses of Warfarin and an INR lever to have a stroke! My sister Nanny 23 was tested and recently diagnosed with APS ALSO, she has thyroid issues too and tingling and now DX'd with Neuropathy! She has never had a clot but a bad ending of a pregnancy! Almost cried ! Her husband was called home from Vietnam wen her son born! She had 3 pregnancies and unfortunately we have more in common than we desire! She too lost a son in the UNITED STATES COASTGUARD at age 23! My son was 24! Speak to nany 23! She sees my HEMOTOLOGIST now and loves him!!! Good luck my Dearheart and Godspeed!!!

[kbmis003 in reply to Debbweb01]

I am sorry to hear about your son.  I think losing a child would be the most difficult and most painful event in one's life to experience. 

If you don't mind me asking, why and how did you lose your leg?  Was it due to APS?  How much time elapsed between the time you lost your leg and when you were correctly diagnosed?  If you had been correctly diagnosed and on blood thinner medication, would this have prevented the loss of your leg?

[Debbweb01 in reply to kbmis003]

X Yes i lost my leg because I was misdiagnosed my whole life! I had been under a Hemotologist for 13 years with an even rarer blood disease calls Polycythemia Ver! Another thick blood problem and had to have blood every week at first, by the pint! I always felt much better after blood removed! I went into remission a year and a half b4 loosing my leg! Also it was the week between X'mas and New Years that I got 5 purple toes! It started with my pinky on Xmas Eveit was just red and hurt! With the X'mas Rush, I thought I stubbed my to and went on thru the festivities! Then the toes all five wud turn purple intermittently! At first wow how cud I have stubbed my toe and not know about it! I went to 2 incompetent docs! One cardiologist who did tests and told me it was bad and must c a vascular doc! I had a great vascular doc, but I was one of the VICTIMS OF OBAMA CARE!!! I fell thru the cracks & he didn't take my insurance! So the cardiologists vascular doc were away for Christmas week and he sent me to one he didn't know! Be repeated all tests cardiologist did and said its bad I have a blockage and he had no idea where! He said to speak to his sec'y and get appt for MRA! Needless to say the girl couldn't get me an appt and went to where I use to work at at St. Francis the famous heart hospital ! I had to sign for a clot buster and was told I had a 50/50 chance it wud work or kill me!!i therefore I signed & prayed! My Vascular surgeon yelled at me cuz I didn't call him! I worked with ham and his wife and he said he'd have seen me for free and still does see me for free!! adored him ! He said I had blood clots, spewing from my heart down to foot! I've learned to accept b my fate! How r u doing)? I wish u the best of luck in all ur endevouurs   Godspeed!

[kbmis003 in reply to Debbweb01]

Thank you for sharing.  I have not really been to a physician yet that really knows much about APS.  I am on a waiting list for a physician in Galveston at UTMB, but that could take months.

[Debbweb01 in reply to Debbweb01]

Hi there how r u doing! I'm having a hard time with docs here in NY, but hopefully this to shall prevail! I hope ur well wud live to here from another Texas friend! I have a few!  Godspeed 

[kbmis003 in reply to Debbweb01]

I have been having symptoms.  My left side from head to foot has been in pain off and on for about a week.  I have to sleep sitting up because my head pain is horrible when I lay my head down.  But, this week I am better. 

[kbmis003]

Thank you for your response and for this information.