Could these neuro symptoms be Hughes Syndrome?

Hi all. I'm struggling to get a diagnosis for neurological symptoms that hit me suddenly 3 months ago. I tested positive for anticardiolipin IGM about a month ago with my level at 23 and am awaiting another follow up test.

I know I won't be sure until I get the test confirmation, but I was wondering if in the meantime you guys could give me your perspective as to whether this could be Hughes Syndrome, as I know it can be a strong mimic of MS, which is what many doctors have initially been suspecting based on my demographics (27 yrs old, female, Seattle). There are a few differentials that point away from MS, however -- namely blood flow issues.

- Oct 20th: 1 week of sudden severe lightheadedness + vision symptoms that significantly improved upon laying down and worsened upon standing. I could actually *feel* the blood rushing back to my head when laying down. This was preceded by sudden hair loss and sensitive scalp.

- Lightheadedness suddenly disappeared, then 3 days later I was hit with a barrage of neurological symptoms that have fluctuated in severity from minute-to-minute or week-to-week but have never fully disappeared and over the past 3 months have gradually accumulated.

These include: full body tactile numbness that began in my neck, then my feet, then spread to my entire body; total night blindness and difficulty adjusting to dim lighting; "slow motion" vision; increased dizziness in bright/loud settings that give me the feeling of "sensory overload"; blurriness that alternates from eye to eye; peripheral vision reduction; sexual dysfunction; occasional tingling in my toes; a new type of aura with migraines; memory gaps; and as of a week ago, noticable heaviness in my upper and lower limbs (more pronounced on the right side) with fluctuating aching/weakness in my right hand.

I've had tons of blood tests, 3 MRIs, ultrasounds of the heart + neck, EEG -- all clear. An SSEP was normal in the upper limbs but abnormal in lower limbs. I failed a tilt table test a week ago in which standing still for 20 minutes caused me to pass out and I awoke with crazy tingling in my fingers. Since then my symptoms have slightly worsened in severity.

One particular symptom makes me believe Hughes is a possibility -- 1 yr ago after an international flight, I had what I believe was a case of DVT (never seen by a doctor as we were overseas). My right foot was extremely swollen, red/purple colored, very painful to walk on, and tender to the touch. The pain lasted 2-3 days and the swelling went down after a week. I didn't think much of it at the time, but the same painful sensation of "blood not moving" reappeared in my feet right before the numbness set in at the beginning of my current health ordeal. I've had the same painful sensation in my legs/arms on random occasions since. Positioning my feet or limbs up and/or down have given temporary relief. To me, this seems to align with the "sticky blood" nickname of Hughes Syndrome, and my theory is that blood not reaching the sensory areas of the brain is causing the unusual neuro symptoms.

I'll also mention that I've always believed my circulation to be poor, as I get cold much easier than most people and my hands/feet are always ice cold. I've also always been lower-energy and more easily fatigued than most people (sometimes even less than my 50+ yr old parents), despite being a healthy weight and in relatively good shape.

Have any of the rest of you had or heard of a similar experience with Hughes Syndrome? Perhaps with the "blood not moving" pain sensation, or onset of neuro symptoms after lightheadedness caused by blood not reaching the brain?

The past few months have been quite stressful but I'm hoping I'll find it's rooted in something treatable. Thank you!

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  • Hi, and welcome, please familiarize yourself with the charity website which contains lots of information for you and anybody treating you. Also I highlight the link regarding specialists to refer to in the UK. Knowing where you are located will help us to help you more efficiently. I also enclose a link regarding the confusion over MS at times, this is also included on the charity website, the symptoms and lesions can present in a similar manner.

    1. hughes-syndrome.org/

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

    3. MS like symptoms hughes-syndrome.org/about-h...

    4. dailymail.co.uk/health/arti...

    People with Hughes Syndrome often have a problem with their Thyroid, and the TSH test is quite unreliable, the also often have a relative with a thyroid problem.

    If you GP/consultant is running tests for you, make sure they also look at your Vitamin D levels, also your Iron, and B also, and a full Thyroid panel.

    MaryF

  • Hello and welcome.

    I agree with the advice that my colleague, Mary, has given you.

    Mary has asked you where you are located but you have said that you are in Seattle. Mary has the details of an APS charity in the USA and I am sure that she will let you have that.

    Best wishes from the UK.

    Dave

  • Thank you Dave, and yes there are names on here you could contact: apsaction.org/ Also other members on here in the USA, we have many! They could also perhaps give you some more local knowledge. MaryF

  • It can be frustrating. . . Doctors who have not treated many APS patients believe that an APS diagnosis can only follow from documented clot events coupled with positive blood tests. But many of us patients can attest to the often bizarre, often impossible to quantify ( I.e., there are no tests for the doctor to read,) neurological symptoms.

    An article posted just today on this site points to possible direct neuron degeneration brought on by antibodies associated with APS.

    In short -- there is probably more that is not known about APS then is known. Check the US web sites for APS aka APLS ) and APS Action to locate a specialist near you who has experience treating APS.

    ( note: the US APS site is useful, but is haunted by sex trolls. You might want to take steps to keep them from spamming you with bizarre meet up offers. Like, register and then use an alternate email address? When I naively registered with them a good 10 years ago -- maybe their security has improved? I hope I hope . . . -- I wrote that I like to ride my bicycle. You know . . . The ones with pedals? And then for months after each visit to that site I would receive invitations to meet up with ( there were pictures!) exceedingly large, leather clothed motorcycle riding dames for " encounters."

    To each his/her own, but for me ? No. so, I stopped visiting that site. I get enough spam.)

    Good luck!

    Gina in West Virginia

  • Gee, I'd think bicycles would be innocent enough!

    Today, my hip is so bad I can barely get to the bathroom, but I keeping mine in case, I ever get my disease under enough control to get on it again.

  • Hi Nadias1987 - What you describe is quite interesting and as Mary has said the confusion between MS and APS amongst Neurologists in particular, who can not be our most unhelpful of advocates for some reason, is well documented on here. This is probably because of there insistence to only go on biological and paper tests that prove everything before they are prepared to act.

    APS symptoms has amongst them the balance, dizziness and migraines. This is normally being caused by the brains in ability to cope with the sludgy blood when it becomes too thick amongst other things. Then of course there are the clots or mini clots that are not sometimes picked up on scans an d-dimer tests.

    I was tested for MS back in the 80's when I went through a lot of neuro symptoms. Of course everything was negative but in those days there were no tests for APS like there is now. Even after my PE they didn't test me for APS putting it down, they thought at first to my broken ankle and then "one of those things". Even my nuclear scan did not show the clot but they all knew that I had the PE and almost popped my clogs!! Following my stoke they did test me for APS because the Stroke consultant did a good history and connected all the dots. But he failed the last hurdle when he dismissed the dx when the tests came back negative. He said he didn't see enough APS patients to have confidence to dx on a negative blood test and symptoms and history alone. But thats when I got to see the Prof and he of course does have that experience.

    The moral of this is that in the US you will have a hard time getting a dx without seeing /finding a DR who is prepared to go against diagnostic criteria for APS. That will probably mean two positive tests at least 12 weeks apart and at least a proven clotting incidence (you already have one positive test). This apparently is because your Dr's will sue you if they treat you with say Heparin and you have a bleed - even if you plead with them to do that! You could of course fly to London and come and see one of the Dr's at London Bridge to get a definitive diagnosis, bringing with you all your test results to cut down on costs. You may then find your insurance companies will be willing to cover you and a Dr willing to treat you and more importantly their insurance cover them with that dx if it is given. I know of at least one person who had done that.

    If I hit a brick wall with tests and thought there was a really high chance that I had seronegative APS or didn't fit the diagnostic criteria, then that would be something I might consider doing if I could afford it. My life might even depend on me doing it in fact. Its such a terrible shame that people have to go to such lengths to find out what is wrong with them and then get the treatment that they so deserve in order to live a reasonable life. Isn't that what we all should have, no matter where we live?

    Oh! and that Tilt Table test - I know what thats like - awful, Ive had it done and should prove that you have an issue with autonomic dysfunction or Dysautonomia. This means that you could have Orthostatic Hypoptention or some other autonomic issue that is being caused by an underlying condition. This can be an issue with APS as in my case but can also be present with other conditions such as Lupus, RA etc. What have they told you about this and what are they doing about it? This in itself should be put together with your other tests and final APS blood test to be seen as the "big picture" to help with a dx.

    Good Luck and please let us know how things are progressing.

  • Hi I have just come out of hospital lost the use of my left leg and pian in the left side of my head and numbness in the left side of my face had all test done for a strok they sed no all test come back ok I had a stroke in February and they sed it was down to APS that's why I had a stroke but they are putting it down to some neuro problem just waiting for more test

  • Take real good care and go back to the hospital if you feel unwell. Have a cheque very soon of your INR as you said earlier it was very low.

    Hope you have had an APS-specialist to talk to who understands what to look for.

    Best wishes from Kerstin in Stockholm

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