Sticky Blood-Hughes Syndrome Support
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Neurologist Vs. Hematologist

Any help I can get with this would be great! I have heard a lot on here about finding an APS Specialist but what kind of Dr would be an APS Specialist?! I have found a Neurologist that supposedly knows a lot about this however I don't know if this makes her a Specialist on it. She is a Neurologist. I have called Hematologists and when I ask if they specialize in APS I get the same type of answers like the Dr knows about APS and treats patients with it. TIA for any advice you can give.

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HI and welcome, the first thing is to tell me/us where you are located, then I will endeavour to help you. Some people see Rheumatologists, others Haematologists and some see Neurologists or a combination of these. The main thing is that the information they have on the disease is up to date in terms of disease management and the medication types. MaryF

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Thank you!! I am close to Toledo OHIO USA

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Ok, well local knowledge on here from others in the USA will help you, we have a lot of people from the USA on here. In the mean time, there is this: apsaction.com/

However your Neurologist may know fully what they are doing with regard to this disease, do have a good look around our charity website, and do send it on to them if you feel it would help. hughes-syndrome.org/

MaryF

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Hi,

I do not know if I have read where you live and near which city? We have many members from the US here so please tell where you live.

We have during the years learnt here that the Neurologists do not "get" what APS is about - too thick blood! I had at least 2 Neurologists but the best doctor might be a Rheumatologist as this is a very rare Reumatologic illness or a Hematologist for the blood-issues.

Best of luck from Kerstin in Stockholm

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Thanks!! Good to know.

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The following sites may be useful.

The American Society of Hematology

hematology.org/Patients/FAH...

Healthgrades

healthgrades.com/hematology...

APS Foundation of America

apsfa.org/apsfadrlist.htm

APS Action

apsaction.org/

Stop the Clot

stoptheclot.org/learn_more/...

APS Awareness USA

apsawareness.com/

MedicineNet.com

medicinenet.com/antiphospho...

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Thanks so much for all the help y'all!!

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Hi. US patient, although West Coast. But, for what it's worth . . . .

By far, in my experience, rheumatologists have the best knowledge of APS. It is incomprehensible in the 21st Century, but doctors still seem to define themselves by speciality. My rheumatologist has been to conferences with Dr Hughes. My neurologist is skeptical that APS even exists. Of course, there are exceptions. However, all else being equal, look for a good rheumatologist first.

Good luck.

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If APS doesn't exist then I guess the blood clots in my leg and lungs do not exist either. The high levels of APL antibodies in my blood also do not exist. Some of these doctors are quite dense. I had a bad experience with a Rheumatologist who told me that APS was just a blood clotting disorder and not a Rheumatic disease. He then discharged me back to my Hematologist. I guess some Rheumatologists do not "get" this disease either. Any how, there are some lists of American specialists on this site I think. There is one doctor in San Diego I have looked into, but he is 100 miles away from my current location. I hope you find a good specialist. When you do, please keep us updated.

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I'm in Indianapolis, I have a hematologist that has dealt with this many times before but have also seen a neurologist about migraines w/aura. Fortunately for me he and other doctors I've been dealing with actually listen to me when I tell them about APS. Best of luck to you!

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