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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