IAPS dx March 1st after a stroke affecting my speech. I have a rheumatologist & neurologist. Do I need a hematologist too?

[loretta1106]

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.

[Manofmendip]

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

[loretta1106 in reply to Manofmendip]

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.

[MaryF Administrator]

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

[loretta1106 in reply to MaryF]

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!

[MaryF Administrator in reply to loretta1106]

All the best to you. MaryF

[Hidden in reply to MaryF]

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

[loretta1106 in reply to Hidden]

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.

[Hidden]

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.

[GinaD]

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.

[Bonnie39]

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.

[Hidden in reply to Bonnie39]

"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.

[Hidden]

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

[Herb]

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.