Hi I found out today I have Hughes syndrome after having 3 different elevated IgM anticardiolipin antibodies. The levels were 22, 19 and 14 so I think I'm of pretty low level. However I've been really ill all year starting with daily migraines for 3 months then having a possible transverse myelitis attack in June leaving me numb from my waist down. I understand this is a pretty rare manifestation of Hughes syndrome I just hoped to hear from anyone who may be going through the same. I'm seeing a haematologist in January and still being investigated with neurology due to my worsening of symptoms and difficulty walking. All my MRI's are clear as is my lumbar puncture results so I may not even have transverse myelitis although my symptoms suggest this is what happened to me. I'm pretty scared I'll never get any better. I'm 24 and have lost my job over all this
Other possible none related symptoms I've been having is tinnitus, visual snow, purple/red blood like spots showing then disappearing on my body, and hair thinning. I've been tested for lupus and that came back negative. Any input greatly appreciated!