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Sticky Blood-Hughes Syndrome Support
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IAPS dx March 1st after a stroke affecting my speech. I have a rheumatologist & neurologist. Do I need a hematologist too?

I am Lipitor (80mg), Warfarin and Paquenil 400 mg. My GP has referred me to hematologist but can't see what he can do that my rheumatologist who is a Lupus specialist and very familiar with autoimmune disease, can't do.

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Hello Loretta.

I was Dx by a Neurologist, who sent me to a haematologist, who sent me to Prof Hughes. Now I just see a rheumatologist, which seems to work ok.

Best wishes.

Dave

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Thanks. I think I have to see what each MD knows and has to offer re care for APS then use my judgement and keep posting and reading here.

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Hi, when you need with Hughes Syndrome/APS is a specialist who understands the condition fully. I have a haematologist and a rheumatologist, some have a neurologist. If the care is good and informative and working well for you, then this is very good. All the best. MaryF

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Thnx Mary. Interesting that the neurologist was the 1st to dx APS--have to see...The hematologist may not be as familiar with APS as are my other doctors. What a journey this is and new to me!

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All the best to you. MaryF

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Hi

Good question..Mine started off with Neuro (I saw a few of them) then saw specialist Rheumys in recent years. Never seen a haematologist yet but I have certain workup which needs to be done and in fact, looking for one for some time (been looking for an understanding haematologist, at least, over 2 years).

MaryF, would you mind me asking who you see e.g. haematologist? At St Thomas's or is there a good private one who you're happy with personally? If it's not allowed to name or discuss a consultant then would you mind PM me, please?

Many thanks for your help in advance as always...!! x x

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I also started with a neurologist who saw me in the hospital after my stroke then consulted with my rheumatologist. My internist (who is following my INR for Warfarin) referred me to the hematologist. I worry that most of the hematologists here in New York City are specialists in Oncology--treating mostly cancer patients. If I saw one, I'd want to see one that is a specialist in APS or at least knowledgeable about APS!! It's really work to find the right people. I hope it goes well for you.

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If they can all work together and sing from the same song sheet then great! Its when one of them tries to stick their oar in and dictate something different thats at odds to the opinion to everyone else that things get interesting! The risk you have with a Haematologist is that they may want to lower your INR too low if they are not familiar with APS. That would be risky and undo everything the other two do put together!

Good Luck - you may need to play piggy in the middle!

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I agree with you, wholeheartedly, APsnotFab.

I guess the most well known one would be Dr B H at St Thomas (associated with this charity)?

Often wondered if these consultants work differently from one another...e.g. different attitudes to things.

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When I was on that scary and bumpy road o diagnosis it was my neurologist, ( sob! Who since moved his practice to another state. --good for him, sad for me as I trusted him,) who suspected APLS and ordered blood work. That blood work was lost -- cue the Peytion Place theme music in your head-- but still! He had heard of APLS and rightly suspected I had it. From reading this site daily, he payed a different tune then the ones I hear other neurologists play.

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I had a stroke 9 years ago, and TMJ pain last year lead me to a neurologist who identified APS via a thrombotologist. I remain under the care of my neuro, and the thrombotologist wrote the guidance for my local hospital on APS, so I guess she understands it. I am on life long warfarin for the APS and remain waiting for treatment for SLE which has also been identified. Sadly the Dr I saw at St Thomas' gave me some seriously dangerous advice re: APS and told me to come off warfarin (!!!) and discharged me. I continued with the warfarin and am now under a neuro, rheumy and nephrologist at my local hospital which has a good reputation for kidney care and transplantation. The nephrologist ordered yet more bloods and I start at a nephrology/rheumatology clinic in a few weeks to treat the SLE too. We need to know if the suspected kidney damage is confirmed and I am hoping to avoid a biopsy. It is tricky having so many specialists caring for me at once for the same conditions, but I will never again trust St Thomas's.

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"We need to know if the suspected kidney damage is confirmed and I am hoping to avoid a biopsy. It is tricky having so many specialists caring for me at once for the same conditions, but I will never again trust St Thomas's."

Hi Bonnie

For some reason, I am not surprised (re. ill advice at St Thomas'). Kidney seems to be a favourite site for SLE..I get blood in urine myself. This is a bad enough condition and if you have a doctor like that..then the consequence must be so horrendously serious..which made me feel so sad.

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Hi Gina

I know what you mean..My Neurologist (I have two of these) is getting older and am hoping he wouldn't retire for good too..I agree it was also my Neuro who noticed I had these autoimmune issues along with two long-standing doctors. I also had a host of useless Neuro as well before I found lovely ones. xx

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I was referred to Haematology after being on warfarin for many years, I had some very high INRs and the haematologists thought they could help me stabilise my INR.

They did help me a lot to understand how warfarin works. However they don't agree with the rheumatologist about what my INR should be.

It can be a problem if the doctors don't agree with each other.

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