Please help: I need to find an APS... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Please help


I need to find an APS Specialist in North Carolina. My doctors are not communicating with each other properly and have prescribed medications that have made me dangerously sick. I also don't believe Eloquis is what I need to be on because my INR levels are 1.1 and I have blood in my urine and have been in A fib on and off for days. They just don't get it.. I need help and I'm tired of feeling like this all the time. I have 2 chronic illnesses and I'm unable to work, I have no air conditioning in my car and that makes it difficult considering I have a 14 year old son that I am responsible for and have been homeless since Hurricane Matthew last year. Someone please recommend a specialist in the Eastern North Carolina area. I have lost 40 lbs. in the past three months and I wasn't trying to. I weigh 125 and am 5'11. I have people stare at me as if I'm on drugs and I don't have a support system that I can fall back on so any help would be greatly appreciated. I am to the point now that I just need to make it for 4 more years so that my son will be ok but I'm tired of fighting this with no answers and more questions than before. Please I beg, someone direct me to someone who can get me back on a path of wellness.

20 Replies

There are a few specialists in NC area! R u near Duke University? They're all in 919 area code! Get back to me I'm from Long Island, NY!

DanaL13 in reply to Debbweb01

I am about 100 miles from there but I'll find a way if it means getting adequate treatment than what I've been receiving so far. Do you have the name of a particular specialist that I can contact?

MaryFAdministrator in reply to DanaL13

I hope this works out for you, going further afield for better care, let us know how you get on. MaryF

I am so sorry to hear what you have been through!

I want to say WELCOME to you all the same to our helpful and friendly site where we all have Hughes Syndrome/APS.

I know it is difficult in the US to get a Doctor who understands this illness and with support system and insurances etc etc.

I can see that you have had an answer already from our member-friend in the US.

Now I wish you Good Luck with everything!

Best wishes from Kerstin in Stockholm

DanaL13 in reply to Lure2

Thank you


Welcome too, I agree with my friend Kirsten, you have landed here with friends.

Keep fighting, I appreciate its hard finding the right doctor for our disease esp in US, Debbweb01 is a great source of information and experience, others in your area will answer soon.

You do need to get your INR level up to at least 3plus, your Afib needs controlling but more importantly, look after yourself, (easier said than done)! xx

DanaL13 in reply to HollyHeski

I'm a member/follower to the site but it's hard to check in as much as I would like and the result of poor medical care has made the everyday tasks of living that much harder so thank you for your support and best wishes to you and everyone coping with APS.

HollyHeskiAdministrator in reply to DanaL13

Check in when you can, dont feel alone, at one time or another, we have all felt helpless and hopeless but something inside us is special and gives us extra strength to go on.

I hope you get an APS specialist soon.. xx

DanaL13 in reply to HollyHeski

Thank you

samueal in reply to HollyHeski

I have APS for 20 years and just found proper treatment at Mayo Clinic in Jacksonville Florida. Lost my kidneys to this disease.

Go to In left hand corner is red box! Press find doctor! Then go to North Carolina

The one in Duke is 919 684-5320 Dr. Thomas L. Ortel! It's in Durham, NC! I picked him cuz Duke University is well known and he may know of colleagues in your area!

All the others are in Chapel Hill, NC and one more in Durham! You cud call them and they may be able to give you direction as to where and whom you can go to! Good luck

I also call local Hemotologist and Rheumatologists in your area and b4 you go ask if they know of APS/ Antiphospholipid Syndrome? Some say no some say yes! Sit with your phone and try that if the others are too far!

That phone number is typo last 4 digits are 5350! Sorry

By the way that number I gave u is for Hemotologist! Also make sure when u make phone calls to Local Hemotologist that they take ur Health Insurance! They'd take most at Duke University Med Centre! It may be worth the trip! Just have ur records ready to go with u!

DanaL13 in reply to Debbweb01

They don't accept my insurance. Even referrals from my doctors won't help.

Seems Debbweb01 has given you some good information. How have you done with it?

DanaL13 in reply to Wittycjt

I was excited at first and then I quickly discovered that although there are doctors that specialize in this and have more expertise in APS, my insurance is not accepted there and I don't have that kind of money to pay out of pocket for medical care in treatment for this. It's hard to stay positive when everything seems so hopeless. It's bad enough that I was misdiagnosed for over 34 years and treated with medications that only made my health worse in the process. I know I'm not alone and that others are dealing with this as well but it's still hard not to be bitter when we as a whole should not have to suffer nor struggle to get adequate healthcare.

Wittycjt in reply to DanaL13

Did you look at my post, there are others?

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