Specific APS specialist or do you mean hematologist and/ or rheumatologist(s)

It just dawned on me that being from different countries, some places call their doctors professors, so maybe there isn't a difference between "specialist" and rheumatologist/ hematologist? Please verify what is meant by APS specialist, this could be why we here in the US have such a problem?

5 Replies

  • Sorry if this causes more confusion, Cindy

  • There are haematologists and rheumatologists who know of APS but do not specialise and are not experts in the condition.

    Two consultant haematologists refused to see me last week as they knew I must be seen by there colleague who is also a consultant haematologist but she has additional knowledge and expertise in dealing with APS. That's the type of dr you need to find.

    Kelly x

  • A Hughes Syndrome (we always refer to it as Hughes Syndrome but APS for short) Specialist is someone who always specialises in this condition. So it could be a Rheumatologist or Haematologist but it means that the vast majority of their patients have the condition. It also means that they would have seen so many variables of the condition that they feel confident in making decisions about a diagnosis and treatment when someone may not always present with the classic criteria like positive antibodies or not having had a clot as this does not always mean that they don't have Hughes.

    Dr's who see many other autoimmune conditions but don't specialise in Hughes will not see many patients and therefore not have the confidence to diagnose. They tend to er on the side of caution which is not always in the patients best interest.

  • I could be wrong but I think here in the US many, if not most, hematologists are cancer doctors (oncologists). That is who I was diagnosed by. She was quite illiterate about APS and the use of blood thinners because she dealt with cancer patients and chemotherapy.

    Thankfully I found another hematologist who specializes in blood diseases, I believe she is the only one here in the Rocky Mountain region. Her exact specialty is sickle cell anemia. I've been seeing her for years.

    At my last visit she referred me to an APS specialist. I didn't know they existed! She felt the new doctor would be good for me, although I will still see her. So, in March, I got an appointment for November. Then the new doc changed offices and my appointment was changed to December 28!

    I do feel lucky to get in before year end and before my new deductible starts. I imagine she may want new blood tests or something. But I've now been waiting since March!

    When I was referred, I googled APS specialist and thats how I found this group, and another on Facebook. I would've liked to find the group years ago, but better late than never.

    We have much to learn from our compatriots across the pond.

  • Well stick with us and Im sure you will continue to learn as we grow too.

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