Why a rheumatologist?

I have read many people who are treated by rheumatologist for Hughes Syndrome. Can some explain why they do? Even though I was diagnosed 12 years ago, I don't know all I need to know about this illness. But I know that my doctor knows even less. I am having to educate him about this syndrome. I need to what to expect for my future. Thank you for any help or advice.

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  • I see a hematologist and always have. IMHO rheumatologists just hand out steroids and the ones i've seen knew less about APLS than my dog does. And the two i saw were supposed to be the best in NYC.

  • Thank you for answering my question.

  • My rheumatologist treats me for it but does the RA and FM. I researched it and asked him to refer me to St Thomas London . His reply was he deals with it as he is haematologist too.

    Since being in hospital with some of symptoms he originally diagnosed me for APS and saying problem is on different level and said he was useless for me...his words... I am waiting to see top neurologist and hopefully be referred to an APS specialist

  • I wish you could be referred to St Thomas. You need that Specialist. When are you going to see that "top neurologist"? You have been speaking about him for a long time. Can you walk today without falling (hope I remember right now but you were a long time in hospital for it). Are you well anticoagulated now"?

    Best to you from Kerstin

  • Have you read the answer 2 months ago from APsnotFab?

    Very good advice indeed. Do not wait any longer please because I am worried about you.

    Kerstin

  • Think I did but can't find it now

  • Aww bless you for your concern Kirsten. Appointment is 13the December . Hope he can help as I have to use wheelchair /mobility scooter when outside.Gone are our walking holidays

    INR range us set 3-4 but since September it's only twice been in that range.now at 2.4.another blood test next week

  • Good luck in your hunt for a neurologist and an APS specialist. When you say St Thomas London, are you referring to London England, or London Ontario. And thank you for responding to me.

  • Thankyou.England

  • I am a Lupus patient who got the 'sticky blood' diagnosis from my rheumy doctor abou 5yrs into my treatment. Seems Lupus and Hughes go hand in hand.

  • I had My diagnosis from prof Hughes himself having seen a rheumatologist both locally and at st Thomas's hospital both of whom missed the fact that I was covered in livedo reticularis and I had 5 metatarsal fractures !! When I finally got to him I was so ill to the point that I thought I was dieing !! He is a wonderful man and 8 years on I feel so much better it's a case of finding the right consultant for you be it a rheumatologist or a haematologist

  • I am about to post up our list of specialists and you will see that they are evenly spread between Rheumatolgists and Haemotologists with a scattering of Obstretic and Neurologists in there too. Prof Hughes is a Rheumatologist and diseases like ours normally fall in their domain however, because of needing opinions about Anticoagulation, Haematologists come into the picture! Then if you have had a stroke or have other neurological issues a Neurologist may be part of your team! But of course if it is pregnancy issues then you will need an Obstertrician!! Have I confused you all yet??!! 😱

  • I should add that there is only one Dr for me and that is Prof Hughes!

  • Lucky you!

    Kerstin

  • APS tends to fall between rheumatology and haematology. Sometimes it seems it falls down the gap between them...

    APS is an autoimmune, which rheumatologists deal with, it also often co-occurs (or is secondary) with other typical rheumatologist diseases, e.g. Lupus. On the other hand, APS is a disease of the blood and haematologists deal with blood disorders, so both have a "claim" to it.

    I have been told (by someone with more direct knowledge) that in fact _most_ haematologists are effectively oncologists - almost everything they deal with is cancer. On the other hand _most_ rheumatologists deal with _some_ autoimmunes. That may mean that rheumatology has the slightly stronger claim to us, but we still sit in the middle somewhere.

    In my limited experience, which department has the best people for APS tends to vary depending on where you are and which of the actual Drs is interested in APS - I have seen both haematology and rheumatology and agreed a discharge from haematology (to leave rheumatology with the lead) because haematology basically didn't have a clue and rheumatology did. Visit another hospital somewhere else and it may be the other way round.

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