Which specialist should we insist on seeing?

We are going to the doctors to insist we see a specialist with regards to my husbands APS. Evidently he saw one in 2007! If we did we were certainly not made aware of why we were as we have only recently had his APS confirmed to us following another stroke. This was supposedly a rheumatologist. So my quest is to speak to either a Haemotologist or rheumatologist but I'm unsure which is the most knowledgable about APS. I have found the list of both in our area that are recommended on this web site but wondered what other sufferers would suggest, please?

Many thanks kath

11 Replies

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  • I would take the Rheumatologist as this is a Rheumatic illness. Lupus and Sjogrens often go hand in hand with APS.

    But the most important is that this Rheumatologist knows APS so he/she knows what symptoms to look for. There are a lot of symptoms from manydifferent organs.

    I personally have both types of Doctors but I am also on Warfarin for my APS.

    Best wishes from Kerstin in Stockholm

  • I asked for a referral to one of the rheumatologists on the Hughes site and the treatment I have had is top class. It took about four months to get my first appointment as it is a different health authority but shorter waits for follow ups.

  • If possible go for the Rheumatologist who hopefully will then engage with the Haematologist with regard to any anticoagulation, that is the route I would take, but it is up to you, best of luck. MaryF

  • If you do go to a hematologist, be sure that they specialize in thrombotic disorders (hemophilia, sickle cell, ect) not an oncologist who focuses on blood cancers. I have found the oncologist types useless with regards to APS. Also be sure to ask if they have ever treated APS before. I was patient number one for one doctor, who announced good news, my Lupus Anticoagulant test was negative, that meant I didn't have Lupus, right? Unbelievable!

  • Hi,

    I believe you agree with me that the No.1 priority with this blood-disorder (as it is also a blood-disorder) is to have a doctor who is experienced in APS.

    No 2 is to be properly anticoagulated as we have too thick blood.

    Best wishes to you from Kerstin in Stockholm

  • Lupus Anticoagulant is a test for APS. You write about Lupus.

    Kerstin

  • I think they were making a point, that the hematologist didn't understand that! .

  • you never, never, never want to be patient one for a hemotologist when you have APLS!

  • If you are not in the UK.....folks on this site have the best referral for the UK try

    this link

    hss.edu/conditions_top-ten-...

  • I have found rheumatologists to be completely useless in my case.

    I have had DVTs and PEs and the issue is my blood. I have sky-high APLS numbers, plus Factor 5 Liden and Factor 10.

    I was seeing a hemotologist who actually has APLS but he retired.

    Will be seeing his replacement who is a coagulation specialist in a couple of weeks.

  • Thank you all for your advise. I find this site very supportive with answering concerns. Bless you all. :-)

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