Had this finally diagnosed early last year after a visit to ST Thomas’s. read lots and lots about all the typical symptoms but apparently mine only affects my brain. Was first noted by neurology that I had gone to with a bad memory and showed lots and lots of white matter lesions. Would love to know if the warfarin has improved my brain but can’t convince anyone to do a follow up MRI. As well as all my neurological and cognitive issues get the extreme exhaustion, muscle and skeletal pain. I find it hard to cope as medically it’s like I’ve been diagnosed here’s some pills no go away and manage your life.
I struggle daily and am afraid to say the warfarin doesn’t seem to make much difference to me. Got a follow up neuropsychology interview to see how much worse I am and then maybe my neurologist will give me another MRI!
Sorry rant over nice to find somewhere where people will understand what it’s like.