I have had a problem with a movement disorder for a few yrs now. I seen a local neurologist who don't think my movement disorder could be related to aps, why i don't know as it's a symptom of aps albeit rare I do know that. He has certainly never come across a person with aps and movement disorder. What I do know is the specialist at the lupus centre would have heard of this and dealt with patients with aps and movement disorder. I cannot believe he wouldn't take into consideration that my diagnosis of aps could be causing this.
So Im thinking do I go and see a movement disorder neurologist (Professor Kailash Bhatia) who has written papers about aps and movement disorder so he has a good understanding of an aps specialist who has dealt with patients with aps and movement disorder?
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Really appreciate you messaging me. I have actually read exactly what you described and I can't deal with that. I'm gonna go to the lupus centre and hopefully see Dr d cruzThank you!
I am not sure how your movement disorder is but through my tripping and jerking cerebral antiphospholipid syndrome was diagnosed.My local rheumatologist tested my bloods and also I saw Professor David d Cruz at Guys hospital for a few years
When were you diagnosed? it affects me like dementia / alzheimer's the only difference being I know I have got it. It has destroyed my memory and changed my personality and causes me problems all day long. Would you mind me asking how it affects you and how they are treating you? feel free to PM me
Did you have a brain scan and something showed up for them to diagnose you with cerebral aps? Because my brain scan looks ok they think my involuntary movement is not caused by aps
I'm having all these symptoms involuntary movements but because my brain scan looks ok they don't know if it's aps or not. Just would be a coincidence that aps causes movement disorders, really struggling to get an answer
I remember experiencing mild involuntary movements (myoclonus like) a while prior to my diagnosis, the neurologist at that time did several tests that came back normal.
Hiya hubby has aps and neurological issues also has cerebral aps diagnosis and sees both neurology for those issues and heamatology for aps. Just told has gene deficiency PTPN11. It maybe that could be the cause of many of his difficulties including APS. Maybe you could see APS specialist and neurologist to get the best care.
HiIf you don't mind me asking....what are your husband's neurological symptoms? I've actually got an appointment Monday in London with professor d cruz
Headaches, memory issues, sleep movement disorder, epilepsy, vision issues, ataxia. Obviously not all aps related though. Hope you get on well with the prof
Tell him I know how he feels with Cerebral APs all depends what area of the brain attacked have the headaches, no memory that lasts more then a day or two so have no past life but just have to look forwards all the time.
So sorry to hear your difficulties with cerebral aps, it's not always easy but sounds like you are focused on the right things 🤗 and bless you will pass on your kind thoughts ☺️
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How do you get proper treatment when the dr you see at Lupus Unit St T says he will see me in one year!
going to a new neurologist thursday
Does anyone have a dr. To dx and treat APS
Is it possible to have APS or Lupus with negative blood tests?
APS target according to Dr Hughes
