Anyone have a list of APS specialist ... - Hughes Syndrome A...
Anyone have a list of APS specialist in the U.S.?
The best thing to do is to ask other members on here, by saying which area you are from, local knowledge on here is always good if you say whereabouts you are in the USA. Some members have also found people on here: apsaction.org/
Mary F x
Hello, I came across this the other day, hope it helps. There is also a thread on here about the highly considered Dr Hughes in London. hughes-syndrome.org/self-he... Cx
I'm afraid our charity doesn't have the resources to build and maintain a list of APS specialists in the US ,so the above link only relates to doctors in the UK.
I think Mary's idea is the best - there are quite a few members on here who are based in the US and may be able to help you 
I live in Washington DC and have been treated since my diagnosis by my hematologist Dr. Craig Kessler at Georgetown University Hospital. He is the head of hematology at the Lombardi Cancer Center at Georgetown. He speaks at international conferences and really pays attention to his patients. Where are you located?
Thanks all, I am from the Kansas City, Missouri area. Do anyone know of a doctor in the Midwest that agrees that APS has the potential of causing more problems than just blood clots. Hughes Syndrome symptoms describes me and my plight to a tee. I need help, I fight to keep my INR between 2.5 and 3.5 but I still live in a fog, migraines, light dots flash into my field of view often and lightly my eyes get where I see double. My joints and I think the connective tissue or muscles hurt constantly. I have had two P.E.'s, and several TIA's along with some other cardiac event that the doctors kept quiet (medical report's showed elevated ensigns but no told of them, I saw it on my medical report). I am to the point of despair, I was recently forced resign from 80k position and can't even remember the names of my former associates or the name of the systems that I purchased, had installed and managed to be able to up date my resume' and fear that I would not be able to mask my symptoms for long if I do land another positions. My wife and I have cut our expenses but I need to get back to work some. I need a doctor who does not think I am crazy.
I am in the US but don't know of a doctor near you. My advice is look on the APS Action website, maybe try to contact them and see if they know of someone. I have been going from NH to Baltimore to see a specialist there.
May I suggest you try a teaching hospital and also a visit to a neurologist that is familiar with APS if you can find one. It will be hard!
I just also wanted to say that I seem to be suffering similar problems and not sure if they are here to stay, transient or what... Its frightening and I am a RN so not exactly like I can afford any lapses of anything at any time! I am currently also not working and coming to the realization that I may not be able to hold a job down again in the traditional sense. Frightening, sobering and rather stressful at times to say the least.
I am here if you need to commiserate!
Kristina
I am also in the KC area and the Hughes syndrome matches me to a tee as well, did you find a physician in the area?
There is a list of Doctors on apsfa.org. However, I have to tell you that the worst Dr I have ever seen came from this list. I cannot understand how someone so incompetent can also be so arrogant. He constantly told me "APS does not cause these symptoms." So I gave him articles about the symptoms of APS but he did not read them. I also referred him to the Hughes Syndrome website several times- didnt help. He refused to be informed by a mere mortal like me. He also lied to me constantly and when I obtained copies of my records I found that he believed my symptoms were caused by "emotional problems." Even though my blood tests were consistently highly positive and my history includes blood clots in my carotid artery. For me the most challenging aspect has been finding a Dr who is willing to help, or at least try to help. I dont know how, please tell me if you find out.
Nubianprof: I think it's a matter of semantics. When I contacted the Chairman of Medicine of a large teaching hospital near Chicago, I was advised APS falls under the category of rheumatologists. Each rheumatologist treats this RARE disease as they run into it, which is RARELY. America, unfortunately, does not have a version of Prof. Hughes. The US does not have one doctor whose practice is mainly APS patients. Since APS often runs with other autoimmune disease any rheumatologist should be qualified to identify and treat them as necessary. Thus, the very word "specialist" really can't be said about any doctor here in the States because they only RARELY see a case in their careers. Rheumatology itself is the specialty. That is why they hesitate to call themselves "specialists" when it comes to APS. It's a malpractice trick question.
Ask your doctor what proportion of his/her patients are APS patients. My rheumatologist has one.....ONE other patient that fulfills the criteria for APS. That answer started me on a little investigation. I began calling all the teaching hospitals in Chicago area. I usually was put through to a Drs. Referral manager as the underlings could not identify the disease. Once you get to the right person the answer was pretty much the same. One would be referred to Rheumatology.
Lack of knowledge about this disease cries out for more research and more doctor recruitment into rheumatology. There needs to be more sharing of information among doctors across the country who DO have that one APS patient in their practice.
So the point is, I don't think you need to travel. I don't think you'll get better care. I would make sure I went to a teaching hospital. I know it doesn't sound very encouraging, but it is honest and I believe it to be true. There is little information to be had on APS for doctors and even more limited sources of reliable information.
Good luck on your journey, Nubianprof.
Warm wishes,
CanaryDiamond10
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APS Specialist in Florida.
