Currently stuck in diagnosis limbo land for the past 3 months, wondering if it might be Hughes. Do you think my results below are enough for a Hughes diagnosis?
Anticardiolipin IGM antibodies are:
23 (1.5 month ago)
20 (1 week ago).
Negative for all other APS tests (lupus and anti-B2GP1).
My symptoms are neurological (postural lightheadedness, vision changes, full-body numbness, heavy / weak feeling in limbs, small muscle twitches, etc.) and are accumulating every few weeks.
Symptoms relating to blood:
- 1.5 years ago I had a DVT in my foot after a plane ride.
- This entire 3-month ordeal was preceeded by sudden hair loss + a week of severe lightheadedness where laying down would notably bring blood back to my head (I could feel it) and make me feel temporarily better.
- Occasional painful feelings of blood pooling + not moving in limbs (similar to what I felt in the DVT, but w/o swelling)
- On the two occasions where I had significant amount of blood drawn for tests, I strangely felt noticably better afterward.
Again, just wondering if this is enough for a diagnosis.
I've had multiple MRIs, ultrasounds, blood tests for lupus, lyme, etc. Had an EMG, EEG, SSEP, VEP, etc (I guess tests for MS / ALS) and all came out totally normal. I failed a tilt test and passed out after standing still for only 20 minutes.
The blood-related symptoms just have me thinking that whatever I have has to be related to blood, so at this point in my research, Hughes makes the most sense. Just waiting on a rheumatologist appointment to confirm that, but the wait is killing me!