Confused: Hi. My doctor has ordered... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Confused

MapsavvyTraveller profile image

Hi. My doctor has ordered lupus anticoagulant and antiphospholipid antibody blood tests. I have been diagnosed with rheumatoid arthritis. When I asked why I was being tested she said it was to rule out APS. I am really confused as to why she thinks I could have this syndrome. I am in my early 20s, never had a miscarriage, stroke, blood clot, etc. I have tried googling but nothing is coming up. I was wondering if anyone here might have an idea as to why I am being tested.

Thanks so much in advance!

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MapsavvyTraveller
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lupus-support1 profile image
lupus-support1Administrator

Many patients have more than one autoimmune disease. I assume you have a high rheumatoid factor which leads to the diagnosis of RA. I have SLE & although I have arthritis, my rheumatoid factor is low. I also have APS.

Please note, lupus anticoagulant is NOT a test for SLE/Lupus, but a complicated clotting test. The name confuses both doctors & patients.

The best solution is to ask your doctor. She may be just doing good diligence to ensure you do not have this condition, which is very treatable.

With good wishes,

Ros

MapsavvyTraveller profile image
MapsavvyTraveller in reply tolupus-support1

Hi. I did not have a high rheumatoid factor, just slightly raised. I was diagnosed based on other symptoms. I first thought it had something to due with ruling out Lupus. Is there other symptoms to the disease? I just don’t understand why I am being tested without any evidence of bleeding problems.

lupus-support1 profile image
lupus-support1Administrator in reply toMapsavvyTraveller

Your doctor may just be showing due diligence. The only way to ease your mind, is to see and talk to your doctor.

With good wishes,

Ros

Wittycjt profile image
Wittycjt in reply toMapsavvyTraveller

We dont bleed but can “silently” , if not outwardly/ noisily, clot. I agree with lupus support1 probably just being cautious. Do you have migraines or any other circulatory problems: pins and needles, pains, etc? Go to ghicworld.org and find more info from the man who discovered this disease: Graham Hughes

MapsavvyTraveller profile image
MapsavvyTraveller in reply toWittycjt

I have had migraines since I was little and recently had pins and needles. My GP said that the pins and needles was from the arthritis. Glad to know my doctor is just being thorough.

MapsavvyTraveller profile image
MapsavvyTraveller in reply toMapsavvyTraveller

Thank you so much for the website- it has a lot of really helpful info!

MaryF profile image
MaryFAdministrator in reply toMapsavvyTraveller

HI It is great your doctor is being so thorough, your migraines need investigating and hopefully they will get to the bottom of things. MaryF

Wittycjt profile image
Wittycjt

Any new information from your doc?🤞

MapsavvyTraveller profile image
MapsavvyTraveller in reply toWittycjt

Hi! So nice of you to check in. The one for antiphospholipid antibody blood test came back negative but still waiting on lupus anticoagulant. My doc has now referred me to a neurologist for the nerve pains in my feet. I’m starting to learn it is always something new with this disease.

Wittycjt profile image
Wittycjt in reply toMapsavvyTraveller

Good luck keep us UTD as it comes 🤞🤞🤞

MapsavvyTraveller profile image
MapsavvyTraveller in reply toWittycjt

I will!

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