history.... numerous TIA'S followed by stroke then diagnosed with pulmonary fibrosis due to APS. got good treatment, sometimes. got better after getting care in boston BWH, around this time i was given CAPS designation. now i have developed multiple longitudinal myelitis. last week went for spinal tap. the lesions are from c3-c5 and t3-t8, ms vs aps on spinal tap not easy to differentiate. anyone else going through spinal lesions?
catastrophic APS : history.... numerous... - Hughes Syndrome A...
catastrophic APS
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2 rhuem that specialize in aps as well. they are thinking about certain steroids again, i am a very difficult case boston puts 2-4 drs plus pa and residents when i go (they can learn) i will more than likely be donating my corpse for aps research when i pass. but im yet to turn 50 so hopefully, got some time yet
i expect that next week ill be heading back for a new plan on how to work this out.
I’m in San Antonio.
I have a multidisciplinary team here and a multidisciplinary Consultant team in London, including Professor Hughes.
I am unusual in that I also clot at a very high INR. ( I clot at 4.5 so we are now running me 5.0. If I get to 5.5 we are not worrying too much.) I now bridge if I’m symptomatic at 4.0. Even 4.2 . I have not had a bleed yet , but I know that this plan is not fool proof. Nothing is.
My body wants to clot and clot despite a high INR and it’s ramping up, so my Rheumatoligist and Hematologist together diagnosed me as meeting the criteria for early CAPS.
I begin Rituximab on Monday.
I do not have spinal lesions, but I do have other neurological manifestation of APS. ( seizures, optic nerve small strokes...)
rituxin has helped me, well once i got in on a correct schedule. i was taking mycophenolic acid for a while but that was more for my lungs. its now the standard of care for pulmo fibrosis w aps. im glad to have been one of the guinea pigs for that as this may have bogged me down but i feel my part in it is to help others with it. this is my inspiration for cadaver donation. good luck with it all im here for you.
have you found a place to take a donation of body for APS research ?? If so could you let me know . Thank You i have been looking but no success . Lets hope we don't need it any time soon but i would like to get something in place. I have rare blood that i was told by Duke Unn. I did that 8 years ago - but i would like to do more if it would help APS people down the road - Thanks Again C & J
so abnormal spinal tap, no surprises there. more mri's needed same ol well everything takes time
I am also a CAPS survivor since 2005 and the first person to receive Rituximab in 2005. I know the creator of Rituximab personally and thanked him for saving my life. I have taken a shot of LW Heparin ever day for 14 years.
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Hi, thats good news for you - would love to hear more of your experiences?