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Looking for APS specialist

Gregstock profile image
8 Replies

Hello everyone.

I am looking for a doctor that specializes in treating APS. I live near Binghamton Ny and have not had any success with finding a specialist.

My INR on Wednesday 11/28/17 was a Venus blood draw = 2.13. My blood draw INR numbers have always been lower numbers than those obtained at the clinic using the Coagchec device. My target range is set at 2 - 3. My dose of coumadin has been 72 mg a week for many months and I'm careful with vitamin k intake. The many coagchec INR tests done by a nurse at the clinic provided INR numbers at the upper end of the target range I.E.: 2.8 - 3.2. I have pointed this out to the nurses and doctors but they say the accuracy of the coagchec is checked often using a comparison study blood draw versas coagcheck. They also say the recommended target range INR is. 2- 3. So as long as I'm in range they say I'm good and will not increase my dose. They will not increase my target range.

I have issues with memory, fatigue balance, and confusion. Many folks with APS report they need a higher INR number to feel well. I need a specialist that understands the need for a higher INR for folks with APS.

Can anyone recommend an APS specialist near Binghamton NY

Thank you

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Gregstock
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8 Replies
Wittycjt profile image
Wittycjt

Is Binghamton in upstate NY?

Wittycjt profile image
Wittycjt in reply to Wittycjt

May be you’re closer to someone in Pa that could help? That’s why I asked where Binghamton is, trying to get close to your local...

Gregstock profile image
Gregstock in reply to Wittycjt

Binghamton is 3 hours from NEW YORK CITY

PA is closer

Scranton 1.5 hours south on I 81

Wittycjt profile image
Wittycjt in reply to Gregstock

I have pmd you, good luck, Cindy

MaryF profile image
MaryFAdministrator

Hi, I am sure over time, somebody from the USA on here will help you with the nearest useful medical specialist to where you are located. MaryF

Lure2 profile image
Lure2

I am so glad you are now looking for a Specialist!

I also would like to say that if you have to choose between two Specialists near New York (must be several in New York I assume here in Stockholm) I suggest you should take the one who is the most qualified of the two. That is very important that he or she has great knowledge about autoimmun illnesses like our and Sjögrens, SLE, Thyroidea (hope I did not forget anyone) and have also had patients like us before.

I wish you Good Luck!

Kerstin in Stockholm

mcnabb_32 profile image
mcnabb_32

We are from Michigan and see a Rheumatologist, his name is Dr. Knight and is 1 of 5 specialists in the US that studies APS. He has just recently taken my husband off of Coumadin because he said the INR tests are not entirely accurate with this condition. My husband has failed on Coumadin multiple times and is currently on long term lovenox injections. This Dr is at the University of Michigan, if you get a chance, look him up.

Wittycjt profile image
Wittycjt

Success?

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