So many questions

[Apriljm76]

I am in New Jersey USA and I feel like there are no experts here in this confusing aps syndrome. I have a hemotologist and a rheumatologist who I feel are doing their best but just don't fully understand. They say there are no other symptoms to aps besides clotting but we all know differently.

I was put on lovenox injections twice per day, full dose aspirin and hydroxychloroquine after an acute ischemic stroke in June. Previous to that I suffered with mysterious symptoms for months such as double vision, numbness, headaches, intense muscle spasms and 2 pregnancy losses ( which they later ruled unrelated). As soon as I started the Meds the symptoms completely disappeared. It's a shame I had to suffer a stroke to get treatment and a diagnosis

Now my hemotologist switched me to baby aspirin. Now I am having issues with my right eye (blurry) and pains in my head. I am worried my blood is becoming sticky again in that area. The eye dr ruled out hydroxychloriquine toxicity and changed my prescription for glasses. Previous to all of this I never even wore glasses.

I took a full aspirin this morning to be safe. I don't trust the doctors to be able to help me. I want to become pregnant too which is a while other debated issue with no clear answers.

I feel so alone with this life long, life threatening disease that no one seems to fully understand.

[MaryF Administrator]

Hello and welcome, you have landed in the right place, firstly you are right to push for more detailed care, and secondly you will have help probably from other members in the USA, we do have many on here.

You are right to seek more urgent care where the doctors fully understand this condition. I enclose this with some names on it for perhaps contact to see who they may know, and also others on here who are nearer to you geographically speaking will be your best bet: apsaction.com/

In the meantime you could email the charity website to your current doctors, highlighting the list of symptoms: hughes-syndrome.org/

hughes-syndrome.org/about-h...

There are also books for sale, recommended via the charity, I have been known to buy them and issue them to those in the medical profession, who I thought could benefit from some rapid reading!

Please feel free to come on here as often as you would like to. MaryF

[Apriljm76 in reply to MaryF]

Thank you. I have seen the recommendation for sticky blood explained and am planning to purchase it. I appreciate the information and have found this site to be very helpful.

I am also hoping to raise awareness through events here and I'm wondering where donations could be made in the us. I have the website of apfsa.org

Thanks

[MaryF Administrator in reply to Apriljm76]

Thank you for your interest, it is not a charity we know or work with thank you. MaryF

[AnnNY]

Are you near NYC? The hospital for Special Surgery is supposed to be good for APS. I know they don't believe in seronegative APS. You didn't say if you have had all the blood tests and been positive. I wouldn't guarantee that you are happy there, but it is a place to try. Sometimes it is hit or miss to find the right Doctor, no matter what, but APS is so argued about that it is really difficult now.

[Apriljm76 in reply to AnnNY]

I am triple positive. I have been to the hospital of special surgery for a consultation but had to pay out of pocket so it's not feasible for ongoing care. Thanks for the suggestion though!

[AnnNY]

Sorry that you couldn't go to HSS:

Here is a link about Doctors in the Northeast.

healthunlocked.com/hughes-s...

I know the member who recommends the doctor in Basking Ridge, NJ seems to like her very much. She may chime in herself soon.

healthunlocked.com/hughes-s...

[Hidden in reply to AnnNY]

Just chimed in!

[Lure2]

Hi, I agree with what Mary had said. ANNY also.

I am also triple positive. At first it helped with baby-Aspirin. Then they tried double dose but that had no effect just got trouble with my stomach. My Hematologist did not either think it would help with a double dose of Aspirin.

I needed Warfarin and anticoagulation. You need that too.

If you could see a Specialist only once and he could instruct other doctors how to help you. As i live in Sweden I have trouble understanding the systeme you have in your country.

Good Luck to find someone who gives you the right anticoagulation.

Kerstin

[Apriljm76]

Yes I am on 70 mg twice per day of injectable lovenox- will need to be fully anticoagulanted for life

[Pearl-a in reply to Apriljm76]

I'm curious why lovenox for life? Or did I misunderstand? From my understanding that's a great medication if pregnant because warfarin thins the baby's blood & as a starter med because warfarin takes a few days-weeks to kick in.

[Apriljm76]

It's because I had a stroke, anticoagulation for life. For now it's lovenox because I want to get pregnant. But I will eventually switch to Coumadin (warfarin). The doctors don't even agree that I should ever get pregnant.

[Hidden]

I have a terrific Rheumatologist/Internist Dr. Andrea Gaito MD...Basking RIdge NJ

she diagnosed my APS 5 years ago......I was in danger of suffering a stroke.....CANNOT RECOMMEND HER ENOUGH....I travel 2 hrs each way every 90 days to have my blood tested by her.....she even draws the blood....I had been ill for years and no MD

tested me for an Autoimmune DIsorder....I went to Dr. Gaito for Lyme DIsease testing...

when she found I was negative for LD she tested for Autoimmune Disorders including APS.....I had never considered this

[Holley]

April,

I'm in DC and see the head of hematology at Georgetown University Medical Center, Dr. Craig Kessler. He's a world known expert and travels the globe for conferences, etc. As you've surmised, miscarriages are often when women get diagnosed with APS. There are many other ailments that are connected to the APS beyond just clotting. For example, I had problems with my mitral valve and had it replaced. If you have any questions, just shout!

Lisa

[cleanerug]

I geel the same. I am in ca. Nobofy knows or really cares because so few of us have Hughes. Be your own advocate and dont take no. Be an asshole and demand care like i do. They know nothing about APS and should be quiet and let us patients say our peace. Be strong and you have a freind. Joe D.

[Lure2 in reply to cleanerug]

Hi Joe,

I do not know where in the US you live. I wonder if you have now found a Specialist to our illness, who you were looking for some months ago?

Wish you well!

Kerstin in Stockholm

[cleanerug]

I finally have a lead on a Rheumatologist here within 40 miles. I am working on getting my referral.

[Lure2 in reply to cleanerug]

Sounds good!

Kerstin in Stockholm

[AnnNY]

Please let us know how it goes. I live a bit north of NYC, and have been on the look out for specialist in APS, particularly ones that believe in seronegative APS.

[Apriljm76]

It seems like the hospital for special surgery has a particular interest in aps