Confused

[Robertsmom]

Hi all im 37 female newly diagnosed with aps only on asprin. Will prob start plaquniel next coming weeks. I need to find a dr in ny that knows how to treat this. I see people saying its not treated with asprin. They dont wana put me on thinners none of my drs think it can cause nurological problems but im dizzy all day everyday i cant even drive. Have weird knumbness on my left side. I hada mri had alota white spots but they say it doesnt look like ms. I get bad headaches brainfog n weird vision blurryness time to time. I see a million drs and none of them seem to know much about this. Help!

[Lure2]

Hi and welcome to this Forum for HS/APS!

The best thing just now is perhaps to put up a new question for a Specialist in ny (is that New York?). Possible some one in the US will see it and answer. We have many members there.

Stay with us as we may be able to help you. Good Luck with that question!

Best wishes from Kerstin in Stockholm

[Hidden in reply to Lure2]

I have yet to hear anyone in this group from US share that they have an APS/Hughes specialist. I have been asking since I got on here. I'm not sure if they exist. You all are so fortunate in the U.K. We have to find a combo of specialists who at least know and understand what APS even is. I was diagnosed with it in 2004 and now all these years later my doctors are just now paying attention to it. The US is way behind on this.

[Lure2 in reply to Hidden]

Hi Toddzchick,

I agree with you that the US is behind on this! I feel so very sorry for all of our dear members from the US.

I heard yesterday about Obama Care and what pres Trump can do and it is not good at all. It will take time and that we do not have.

Best wishes from Kerstin in Stockholm

[ndstephens49 in reply to Hidden]

Amen!

[Hidden]

That's what stinks about being in the US. Not many APS specialists that I have heard of so you have to find a combination of specialists who understand APS like a Hematologist, Rheumatologist, and Neurologist. But getting them all on the same page is difficult. I have APS also and I have plenty of neurological symptoms that mimic MS. I hope you find someone. Please let me know if you do. I am in Ohio and I would drive to NY if I knew there was a good APS specialist there... 5 hrs not my preference but eventually I may have to make a long drive to see someone.

[Robertsmom in reply to Hidden]

Wow atleast i know im not alone. I 2eill definately let you know when i find a dr.. i am looking like a crazy woman

[MaryF Administrator]

Hi, where are y0u 10cated as y0u need a pr0per c0nsu1tant wh0 understands this c0nditi0n, s0rry ab0ut my typing, using a rapid1y breaking 1apt0p MaryF

[Robertsmom in reply to MaryF]

Thank you so much for answering me. Im in long island ny but i am willing to go anywhere in nyc bronx brooklyn queens.

[AnnNY]

Have you had a stroke, blood clot or multiple miscarriages? Have you been diagnosed by your blood tests alone? Where are you in New York?

Unfortunately, as far as I have discovered the docs that I have seen in NY wouldn't treat with anticoagulants unless you had one of these severe symptoms. The neurological symptoms they consider "controversial." I had gone to the Hospital for Special Surgery where they do have specialists, and that seemed to be their stance. I haven't been there for a year and a half, and it is possible they could have changed their minds. If you don't live very close to New York City, they do have some offices out of the city.

I didn't have the normal three antibodies that are tested for, so that made my diagnosis trickier. If you have high titers of the usual antibodies, and more significant neuro symptoms that I did....

If you are having stomach problems, you might be able to ask your doctor for Plavix, which works something like aspirin, but is stronger and easier on the stomach.

It is possible the plaquenil and aspirin are good enough for you, but plaquenil takes a long time to "kick" in. When I first took plaquenil, it did help with a lot of my neuro symptoms, including flares of brain fog. At the time, I had only be diagnosed with lupus, but I expect I had a milder form of APS then.

I had to go to Colorado to find a doctor to treat me. My doctor there tested me for one of the "secondary" antibodies and found out I wasn't seronegative. I don't know why the doctors in NY didn't test me for these antibodies.

I had a lot of MS symptoms, but not MS. When I saw the MRI report for a head scan it was supposed to be OK. I looked at it myself and found I had one of the white spots. I guess the radiologist considered it not to be worth mentioning.

If you have history of stroke, blood clots or multiple miscarriages, I'm sure the doctors at HSS would be good and knowledgeable.

[Robertsmom in reply to AnnNY]

Thank you so much for answering me. I dont know if i have had a stroke i think so my mri shows tias but they say i am to young for them. I went to the hospital in march with numbness paralysis in my left side thats when i started to find out about aps. I only has 1 out of the 3 come back postive. The nurologist sent me again. They took a second test to comfirm it. It was mid high. Then i started to see rhuemenatologist and hemotologist. They both say different things though and seem to know nothing about it. I even started to take two asprins bcuz one didnt help me although i def felt better taking asprin. Im worried about taking them forever. I did get a scan of my liver b4 i knew about this and has 2 hermangeomas on it i womder if its from aps. I do have some stomach issues. I have had 2 miscarriages but 1 birth. I did think about traveling to see a dr that could help me. I just want to do whatever i can to make sure i get this under control. Im so dizzy i cant even drive and i had to stop working. I am going to apply for disability becuase my life has come to a stand still i cant even care for my 2 year old without constant help due to my symptoms and i feel like no dr listens to me. I want to work and drive and take care of my son. This is terrible im only 37 i just want to be normal. My symptoms started about 2 months after i gave birth to my son ans just keep getting worse.

[AnnNY in reply to Robertsmom]

So, it would seem to me you are definitely positive by your blood tests. If you have had miscarriages you may be a candidate for anticoagulation even by more conservative rheumatologists. Do you live in bus or train distance to Hospital for Special Surgery?

A number of doctors have been mentioned here from HSS.

Many people with autoimmune diseases have had bad experiences with doctors. Finally getting on an anticoagulant made a big difference to me. It is difficult sometimes to get on the right treatment, but please don't despair. You do need to get treatment for yourself and your children.

I have hemangiomas, too. I don't know if they have to do with anything. My understanding is they are benign and not a problem.

[Yllek in reply to AnnNY]

Hi can I ask what secondary antibodies you talk about? Just out of interest. I'm positive for lupus anticoagulant only but don't know if any others associated with aps apart from the standard 3 they test for.

Thanks

[AnnNY in reply to Yllek]

This is the antibody I was positive for: Phosphatidylserine AB - IgG

I noticed that I was tested for a lot of different secondary antibodies.

She tested me for them because I was negative for the primary antibodies, but had many MS like symptoms that could be APS.

I think if you are positive for the primary antibodies, you probably don't have to worry about being tested for the secondary antibodies. I had been tested for the primary antibodies before but no one tested me for the secondary until my rheumatologist in CO. And it seems like I have been tested for everything.

[Wittycjt]

Please see my post from month ago..."if you are from the US please tell us who you have taking care of you" it has almost thirty responses and may lead you in the right direction. I've also read their is a specialist gonna try to find it.. I'll be back🙃...Found it. KellyInTexas posted: Rutgers University hospital in New Brunswick has a specialized floor for thrombotic problems, maybe she can expound on this, Kelly?

[Wittycjt in reply to Wittycjt]

Kelly in Texas can you assist here ?

[KellyInTexas Administrator]

Sorry- just checking my email.

Hello Roberts mom, and I'm So very sorry that you are having such a rough time right now. Believe me when we say we understand. Your tummy may even be feeling very sick because you are Gavin micro clots into bowels. ( I did .)

I can tell you this much. I went to HSS in NYC. For me personally it Was not a great experience. They only consider APS to be turkey legitimate if your antibody tiger counts are " at least 40 and preferrably 70 or higher." The physician I saw told me this personally.

I will say in their favor this may have been only one doctors opinion. I also believe they have a very good pregnancy center.

I'm not sure when they got a new set of rules to the revised Sidney criteria and didn't share with the rest of the world. ( these are not the agreed upon lab international cut off criteria.)

Rutgers in New Brunswick does have a heme Dept and pro thrombotic disorders department. Im not sure if it's in patient only though. You would have to call.

[Holley]

Welcome, I'm in Washington DC and see a great hematologist for my APS. His name is Dr. Craig Kessler. He's the head of hematology at Georgetown University Hospital. There's also Dr. Orton in North Carolina, I believe he's at Duke Medical Center.

[Jean_12]

I know Duke in NC is doing a lot of research in the field of APS -

Study 1 - medicine.duke.edu/divisions...

Study 2 - clinicaltrials.gov/ct2/show...

[Jean_12]

Holley mentioned a doc at Duke- (Dr Ortel) here's his bio

medicine.duke.edu/faculty/t...