Hughes syndrome

[Simmer]

Diagnosed with SLE a month ago and now in hospital with cerebral antiphospholipid syndrome which has caused encephalitis, coordination problems, TIAs and epilepsy. Anyone else had or has this?

[MaryF]

Hi there, I have Hughes Syndrome as well as Lupus and three other autoimmune diseases, sorry to hear about the tough time you are having. Lots of people are on several forums, for instance I am on this one and also various others across the HU platform, for more detail on your Antiphopholipid Syndrome it might be worth looking at the Hughes Syndrome forum and also the charity website, to fine tune detail alongside info from on this forum: This is a link to the actual charity: hughes-syndrome.org/ Mary F x

[Simmer in reply to MaryF]

Thank you Mary. That was a great help x

[Davidj]

Yes , last New Year's Eve I was told I had Hughes , had had SLE for 7 years. ( Hughes or stickey blood syndrome ) in addition to Coumadin they put me in

[Davidj in reply to Davidj]

Yes - had SLE for 7 years , last New Years I had a stroke, I was told it was ( Hughes or sticky blood syndrome) in addition to Coumadin I was out on Dipripthamol ( platelets were sticky ) since then no more head aches or even clots ) you may want to ask about this med. feel free to ask me any ?s I've learned a lot since then good luck! Many blessings

[Simmer in reply to Davidj]

I have had epileptic seizures to noise, light and smells. Coordination and balance is bad, sensitive to light, waiting for MRI of spinal cord and results from lumber puncture to see is antiphospholipid antibodies in spinal cord r causing probs. just need to know if this wil be permanent or not. Any ideas?

[goldengirl101]

I have APS too, was dx with it shortly after being dx with SLE Lupus & Sjogren's Syndrome 14 yrs ago. I had a major 2 strokes due to APS this was a yr before being dx. It was Professor Hughes who actually dx SLE, Sjogren's & a little after he dx me with Hughes Syndrome (APS). I also have RA, angina, Hyperparathyroidism, Temporal Arteritis, Vasculitis, MVR, 5 t.i.a's, & had stage 3 Breast Cancer which had to have a radical mastectomy of my left breast. Unfortunately I couldn't have reconstructive surgery due to my ill health & esp the APS. I think there's a lot of people that suffer from APS due to SLE, Sjogren's & other autoimmune disorders. I belong to an online support group for SLE & other automimmune disease's & loads of people on there suffer with APS. I think the link to the Hughes syndrome support group that MaryF has suggested looks very good & am going to try this myself. Even though i've been dx for some time now I still don't know everything about Hughes. I'm very sensitive to lights & some smells, & my coordination is terrible. I get spasms where my arm & hand will jerk involuntary & the same with my legs. I wish you luck when you have your MRI & do let us know how it goes? Take care of yourself.