APS specialists in the US

If you see (or have seen) an APS specialist in the US, would you mind sharing who you see and your experience?

I am in the southeast. the closest I have found is Dr Tom Ortel at Duke, which is 8 hours away. Has anyone seen him, or should I go to HSS in NY?

I'm hoping to consult with someone who will guide my internist at home, perhaps. She is knowledgeable about clotting disorders (has one herself) but doesn't want to make recommendations. I think she would be open to monitoring and consulting with a specialist.

This will be out of pocket, require travel, hotel, etc. so I want to see the right person!!

Thank you!

20 Replies

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  • Hi, I am sure you will get some useful answers as we have many from the USA on here, best of luck. MaryF

  • Hi! I am new here, but I just made an appt with Michael Lockshin, M.D. at HSS. I found him after doing lots of research on the Internet. I haven't gone yet, but I am looking forward to it. My Drs don't know what to do with me. Good luck!

  • Thank you! I checked out his website and he looks fantastic! How long do you have to wait for an appointment? I would be very interested in your experience after you see him!

  • Have you been evaluated there yet, if so how did it go?

  • I consulted with Dr Winkelmann in KY (across the river from Cincy.)

  • Thank you so much!

  • Hi, Mayo Clinic has specialist. I was an appointment with Taimur Sher in Jacksonville, FL.

  • Thank you!

  • HSS Rheumatology/APS department

  • All I can say is I went to Dr m. Cromwell in NYC & HSS, but we can private msg if u want! Went to HSS and there's a great doc there but he don't believe in SERO negitive! Good man but differs from Dr. Hughes! There are several others within his practice that specialize in APS! He DX'D me with RA and wen he heard my sis had APS also wanted to c her results! Good man in research and brilliant! I just totally go by Doc Hughes! We can go to private msging I think? Lol...

  • Sorry plus if I recall u went from positive to negitive am I correct?

  • Thank you so much! I did go from positive to negative, somehow in between April and May. Prior to that, I've been positive since 2012. My hematologist suggested that it may have been due to a course of steroids I took. Not sure--awaiting more recent labs.

  • I must also research that doc! I have to tell my Hemo a lot and he started listening to me lately! Just call b4 u go to any doc! Ask if they know or treat people with APS! Knowing and treating are different! Went to Rheumy who made mistakes to my test questions! I always have test questions! Three of them and he answered all 3 wrong! I go Monday to new Rheumy that treats APS ! We shall c! Try ur 8 hrs away doc but call and ask what u need to ask ! If he treats APS! Explain to his nurse that u have This rare syndrome and ur coming from afar! They'll get back to u as they do me!!! Try that and c what happens! If u want to private msg me feel free!

  • Julie,

    I see Dr. Craig Kessler, head of hematology at Lombardi Cancer Center at Georgetown University Hospital in DC. He studied at Duke and I believe he knows the doc you mentioned from Duke. Dr. Kessler travels all over the world as an expert in blood disorders. There can be differences as far as protocols and treatments within specialty areas. I saw a hematologist at another hospital but their team managed my anticoagulation differently than Dr. Kessler. My INR was unstable all the time with first doc but stabilized with Kessler.

    Let me know if you need any help or have questions. I don't let other docs do any procedures without clearing it thru Kessler.

    Lisa

  • Thank you, that might be a good option--family in the DC area!

  • Great!

  • Here an article on APS from HSS:

    hss.edu/condition-list_anti...

    They seem to very strict in who they diagnose. In my experience they want a clear history of blood clots, strokes or multiple miscarriages, plus high titers of one of the antibodies on every test. As far as I can tell no one believes in trials with anticoagulants for people who don't meet these criteria.

    I'd read this very carefully to see if you think you would be treated.

    There are other articles about APS on their website. It makes it pretty clear they are not following the practices of Dr. Hughes. It you definitely meet their criteria, I'm sure they are very good.

  • APsnotsofab this is the article!!!

  • In my case was a nice experience with Mayo Clinic, because they have wide experience with autoinmunity troubles. For instance, I started with APS, but with the support and learning received by means of this blog I understood the sympthoms and the relationship with other diseases like Celiac disease, Hashimoto's disease and Sjorgren. With this information and my results of different tests, they confirmed that I had the four diseases, originated basically by Celiac disease (gluten intolerance). In this moment they reviewed and confirmed my treatment with warfarin and the use of Coagucheck, diet, excercise, etc. Today I am very well and under control.

    My appointment was with four specialist: Dr. Taimur Sher - Hematologyst; Andy Abril - Rheumatologyst; Dr. Elizabeth Mauricio Neurologyst and Dr. Andrew Oldenburg - Vascular specialist.

    Mayo Clinic have four different locations in US : mayoclinic.org/

    Good luck.

    John H.

  • Thank you so much for this! I have celiac disease as well. So mayo says your other autoimmune diseases originated from celiac? In very interested in that--celiac was my first diagnosis as well.

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