Help with specialist consult - doctors confounded in U.S

[Kjinnett]

I'm new to this blog. Thank you so much to the creators and participants. I've been looking through questions and answers about APS specialtists in the U.S. Is there anything like the Huhes Center in the U.S. Even the premier academic medical centers and the Mayo clinic seem confounded about APS. And in light of Dr. Huhges April 2016 post are shockingly unaware that if you have a genetic history of APS and are showing symptoms perhaps you ought to be on a blood thinner even if you have a negative APL test. i've looked through specific responses to certain questions and am still wondering: Did anyone ever respond about a knowledgable doctor in the kaiser system, preferably California. I've checked the various weblinks offered and those appear to lead to dead ends. Finally, does anyone know what would be required to have a consult from Dr. Hughes. We can get ourselves to the UK. Thank you for any advice. Seems we have a strong family history (Genetic) that may manifest in younger members of the family with symptoms but no positive APL tests and manifest in older members of the family with strokes and even death despite a warfarin and/or heparin regimen.

[MaryF Administrator]

Hi, it is often tricky for patients in the USA and also other countries, but on this forum members in the USA do swap very good localised information on specific doctors. MaryF

[Ozchick]

Just to let you know a consult with Dr Hughes will probably be a six month wait or so-so plan in advance. I saw another of the Doctors there 2 years ago (Prof Khamasta-lovely man) who then wrote to me and my specialist with his finding. As I was traveling to the UK in any case, My Rheumy suggested I could get an appointment. I feel it was very worth while and I had time to put my history together in a timeline so I didn't forget to mention anything. My husband was also with me and could answer some of the questions when my mind went blank! I could also have the blood tests that were requested back here (and saved me the £451 if I had it done there) AT the time I think the consult was around £260 around $500 Australian)

If you can afford it, I consider it money well spent!

[Hidden]

It might be worth contacting UCSF-they have strong rheumatology faculty/staff & research, if there are adolescent/pediatric family members you are concerned about consider contacting Emily:

pediatrics.ucsf.edu/faculty...

She may also provide you with direction to other faculty members for adults.....good luck

[Holley]

I wish I was West Coast based and could be more helpful. My hematologist, Dr. Craig Kessler, is very knowledgable about APS. He's the head of hematology at Georgetown University Hospital in Washington DC. Duke University also may be of interest: medicine.duke.edu/divisions...

They might be worth a call to see if they can suggest someone closer to you.

Like many on here, I have a family history of autoimmune disorders. Make sure to include any info on your relatives when you do see a specialist.

Lisa

[Holley]

Me again. I just did some quick searches for UCLA & antiphospholipid syndrome. Have you had any luck with them? Here's some links:

rheumatology.ucla.edu/body.... (scroll down to Dr. Jennifer Grossman)

rheumatology.ucla.edu/body.... (search for docs based on condition)

[Kjinnett]

Thank you all for the helpful replies. We are in the San Francisco Bay Area and if UCSF was stumped by a family member's recent case which ended in death. They had a rheumatologist, hematologist and neurologist in this case. Our concern now is trying to finding u.s. Specialists for the younger members of the extended family showing symptoms and comorbidities such as migraines (daily), light and sound sensitivity, raynauds, fibromyalgia, lupus-like symptoms, joint pain. Because the APS/APL tests have yet to be positive for these young family members they aren't being treated with blood thinners but instead drugs for symptoms such as plaquenil and anti seizure meds for migraines. We've even had consultations at the mayo clinic which resulted in the fibromyalgia diagnosis. As a precaution one young family member with the worst symptoms is taking a daily aspirin, but we would like to find a good specialist with enough knowledge about APS/APL to understand that the APL test might be negative, but with symptoms and strong family history the possibility of APS ought to be taken seriously. Do you think your hematologist on the east coast would know of a hematologist on the west coast? I'll also contact the UCLA doc as well. Thank you

[AnnNY]

Did the doctors finally understand that your family member who died had APS?

I'm afraid it is very bad news in the US for seronegative APS (or in my case APS with secondary APS antibodies). There are very influential APS "specialists" in the US who are denying that seronegative APS exists, or even seropositive without a history of blood clots, multiple miscarriages, or strokes. They don't believe in heperin trials or trials with other anticoagulants, and won't try them even if you ask, are very symptomatic, and in my case had accidentally found that heperin worked like magic. I was told, no one in the US would give me a trial with anticoagulants and they were at renowned memory center, nor could I get a trial with anticoagulants at a renowned rheumatology department and center for APS in New York. Neither was I tested for secondary APS antibodies, "because they didn't understand them." ( I was treated with plaquenil and a low dose of prednisone.) I was thinking of going to England when Dr Hughes stopped taking new patients, and Dr. Khamasta disappeared. It feels if doctors are just putting their head in the sand, until we will go away or perish.

I did finally find a doctor in CO (where I fortunately have family), who has put me on Eliquis and Plavix. Her name is Dr. Jill Shofield, and had worked with Dr. Hughes. She was at the University of Colorado Hospital at Anshutts, but she has left there. She will be with a new practice in the Denver area at the end of September. She has a huge list of patients and many are waiting to get into see her. Last year I made my appointment in December while she was still at UC, but couldn't see her until May.

I did have a rheumatologist in the '80s who suggested I take an aspirin for my migraines, and a neurologists a few years ago told me the same thing for my other neurological symptoms, so I just took aspirin while I looked for stronger anticoagulation. While it didn't work as well as what I'm taking now, it did work.

I do think it may get better with rivaroxaban having worked in one APS study, and a new antidote for rivaroxaban and apixaban coming out soon, and also with more patient success stories being seen.

I hope some of the doctors and practices in CA mentioned to you above are more enlightened than they have been in New York.

[Kjinnett]

Thank you so much for your thorough story. The family member who passed was diagnosed with APS eight years ago after having a massive stroke and being misdiagnosed with MS. Unfortunately he had another stroke eight years later even though his blood was at therapeutically thin levels from the Coumadin he is on. Despite efforts of top specialists at UCSF, including a visiting APS specialist from overseas, he passed away a few weeks after this recent stroke. Our concern now is ensuring his young relatives' symptoms are not dismissed or misdiagnosed. We'll keep searching and following up with the good suggestions offered here. Thank you

[ehc918]

Hi. I live in Southern California and I found the name of Daniel Wallace, a rheumatologist in Los Angeles. He supposedly is APS literate, but am not sure if he is familiar with Dr Hughes. I sent an email inquiring this but was given the run around. I think I will call them directly this week, but might be somewhere to start. He has a web site if you do a search for his name in Google. I will post any info I get after I call.

[Debbweb01]

Hi I'm from NY as Ann is! It's horrible here and The USA doesn't recognize SERO-negative! There is a website called apsfa.org! This is APS site that give you docs that specializes in APS! After 10 months of being DX'd and loosing my left leg, I found a GREAT Rheumotologist from that site! Good luck and have a look! I think many in CA! Godspeed!!!