Blood Clotting Disorders and Lupus??

I have Systemic Lupus as well as Protein C Deficiency and Factor 5 Leiden Mutation. Lately along with other typical Lupus symptoms I have been experiencing numbness in my arms, loss of vision, a headache in the middle of my forehead between my eyes that hits out of nowhere (almost feels like the blood is rushing to my head)and sometimes makes me weak to where I want to fall on the ground. I've been in the ER 3 times thinking I was having a stroke. I had an MRI Done and was given a diagnosis of Neuropathy. Could this be related to Lupus or the blood clotting disorder I have or a combination of both?


14 Replies

  • Hello

    Do you have a diagnosis of APS/Hughes Syndrome?


  • I also wonder if you have got APS? This is a site only for APS and we are no doctors here.

    I suggest you speak to your Specialist about this to role out you have got a TIA.

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin,

    I have never had a doctor diagnose me with APS/HUGHES Syndrome. I do however have Protein C Deficiency and Factor 5 Leiden Mutation which my doctor referred to as "Sticky Blood". My great grandmother, grandfather, and mother all have "sticky blood" as well. Great gma and gpa have also had DVT. I noticed on you page in the about section it said something about "sticky blood" which is why I posted assuming it was either the same thing or similar to my blood clotting disorder. I have also seen a neurologist and I see a hematologist who have ruled out TIA. Assuming my Lupus was attacking one side of my brain mimicking the same symptoms of a stroke, however I was wondering if it could also be associated with my blood clotting disorder, just trying to put the puzzle pieces together as best I can! I'll have to really look into APS/Hughes Syndrome.


  • Hi

    I agree with my colleague Kerstin.

    APS/Hughes Syndrome is often called 'Sticky Blood'. If I were you I would ask to be tested for it. The correct tests can be found on:

    Please have a good look on the site and print off any information to take to your Dr.

    Where are you from?

    Best wishes.


  • i agree with Manofmendip. You have perhaps had it tested. Hear with your Specialist.

    Kay Thackray has written (she also herself has Hughes syndrome) two very informative books which I think you shall buy on the Hughes Syndrome Foundation Charity website. "Sticky Blood Explained" and also "More Sticky Blood".

    I wish you good luck and please let us hear how it goes!

    Kerstin in Stockholm

  • Lupus itself can manifest with " sticky blood.". The APS version of " sticky blood" is often called " primary Antiphospholipid syndrome" because many of us do NOT have lupus as well.

    But the 2diseases overlap so do explore having the blood work to confirm or rule out.


  • Hi Gina,

    Very interesting!

    Hope you have a nice day in West-Virginia!


  • Thanks Gina that was what I was suspicious of. I appreciate your response and the info has been most helpful. Thank You :)

  • Hello,

    I have lupus since I was 21 years old. My dad has 3 strokes, while taking aspirin.

    A few years ago I was diagnosed with trigeminal neuralgia with horrible pains in my head. I was only given very strong painkillers.

    The MRI showed tias, especially on the left side of my head, when I had these pains from the 'neuralgia'.

    No doctor paid attention, and I have to keep up with my life, always making funny excuses for confusing what I say :-)

    Take care of yourself. Take a second opinion, research, talk!!

  • Hi,

    Have you ever been tested for Hughes Syndrome (APS)? As we are not medical trained here and the site is for Hughes Syndrome I can only advise you to see an APS-doctor to do some new bloodtests. Where are you from?

    Best wishes from Kerstin in Stockholm

  • Sophia,

    Wow! That sounds very similar to what I'm experiencing. Thank you so much for your response! Best of luck to you:)

  • Hi Kerstin,

    Thank you. I live in the UK. I was lucky to be diagnosed with APS a year later as part of the pre-pregnancy tests. My renal doctor found out and attributed hugely to saving my life and my child's life. I had an extremely difficult pregnancy but I knew before hand what I will have to go through.

    It's only the fact that the GP basically did not pay the necessary attention when the Tia's were happening.

    Sophia xx

  • Hi Sophia,

    Glad to hear that you had such a remarkable good renal doctor!

    How is it now? Have you found your APS-doctor instead of that GP that did not pay attention to your TIAs? If not please look at in your area....

    Please let us hear how it goes for you.

    Best wishes from Kerstin in Stockholm

  • Please look at the link:

    and then "selfhelp/specialists in your area". I perhaps did something wrong with the other. Hope you will find it now.


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