Is it possible I still have hughes just because 1 doctor tells me I dont????

[fredred]

I went to a immunologist/rhemologist. Who told me it does not sound as if I have aps as I have 1 child and no clots. My cousin has the disease and ive been having some funky episodes with weord symptoms so I got tested for aps and as far as I know tested positive but the doctor closed down so he couldnt my blood test so he says I dont have it. He is running more test hut im so confused and feel like a lab rat. What do I do from here??????

[MaryF Administrator]

Hi there, you insist firmly that you are sent to a rheumatologist or haematologist with APS knowledge, please let us know where you are located or look at the HSF website which will show your nearest specialist. It sounds as if he/she is not fully up on the condition which unfortunately is not that unusual. Mary F x

[fredred in reply to MaryF]

Indid insist to see a rhematoidologist. He was suppost to have knowledge and I hoped he would be able to preform miracles and tell my doctors what to do with me. Im located in chetwynd bc canada. Far and few between doctors with aps knowledge are here. I went to vancouver to see dr. Esdaile. Im just so confused sigh my rant is on the bottom lol. And I just want to let you know I've read some of your answers on here, you truly are a wonderful and caring person. Thanks for being positive with everyone and I am sure brightn peoples days.

[SassyOne]

It's definitely possible. If you had your lab tests done somewhere else contact them & request results be sent to your Doctor. If that doesn't work you will have to redo the tests. Even if you do test positive your doctors may still hold back a diagnosis since you don't technically meet the diagnosis requirements.

I think my hemotologist would rather me die than admit he was wrong. Went to see him during pregnancy. I had PE in my early 20's (he said it was provoked so it doesn't count) pregnancy complications, migraines, unexplained seizures, 2 positive blood tests etc. he said none of my symptoms were hughes related. He took me off of my blood thinners because I don't need to be treated & I miscarried a week later. He didn't want to see me after. I was so angry. My new OB for this pregnancy couldn't believe I wasn't on fragmin with my extensive history. He put me on fragmin immediately!

So find someone who will listen & fairly evaluate you. Good luck & give the lab a try!

[fredred in reply to SassyOne]

Omg could you sue? That is awful. And understand how you feel, couldnt we just be happy I havent had a clot and lets try to keep it that way insted of having to prove you wrong with my life. I did the test and a bunch more but he is only testing me the once while im already on warafrin wouldnt that mess up the test? Aren't you suppost to take it 3 times? IM just worried because my regular gp wants to diagnose me with ms so I will be off my blood thinners and put on more crap I dont need. In my town you go to emerg with chest pains theyngive you pepto, go in cuz you cant see well and your right side is numb they give you anti anxiety meds. I want to put my face in my pillow and scream. More ranting at the bottom here, thank you for taking the time to answer, I means lot you are a very strong and positive lady, I hope great things come your way thanks for the advice

[uscglady]

Keep going until you get a definite diagnosis. I never got a positive with blood test results but have been dx'd on symptoms alone. Late term stillbirths in my 20's, 6 strokes, arteries in my left arm and right leg clotted up continuously. I finally found a rheumatologist who ran all the tests and dx'd me finally on all the clotting events I've had. Read all you can about APS and be your own advocate and insist your doctors help you get whatever you need sweetie. I know it's hard but you can do it and keep coming back here and asking questions - most patients know more than individual doctors know! Hang in there. Hugs, Laurey

[fredred in reply to uscglady]

They ran the test 3 times and I got 2 positives but as I have a kid and havent had a life threating incident nor has he seen my blood work the rhematoidolgist doesnt want to say I have aps. Insted he said fibromyalgia and told me docs wont help me with that I have to do aerobics 5mins a day and thats it. I wasnt fat when I starting having symptoms but now I am and thats how he sees me. I travelled 12 hours for that! My biggest fear is my new gp wants to diagnose me with ms cuz they all figure if im on warfrin I should be fine and all my symptoms are something else, what if my 1 result comes back negative and then im off the warafrin do I really need to have a stroke for them to take aps seriously im aI dont have time for that. And another question if I take 9mg of warafrin and my blood only thins to 1.6 wouldnt that say something? Thats what im confused with. Sorry for the rant I appreciate your answer and so sorry for all you have suffered with. It must be hard your in my thoughts. I kinda feel ashamed there are so many who have it worsenthan I. Lots of love Crystal

[MaryF Administrator]

Hi there, also bottom left on list here for some phone and email contact may help: apsaction.org/

Mary F x