To see a neurologist or aps dr at lupus centre?

[Charts]

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?

[lupus-support1 Administrator]

I would also see an APS specialist who can always refer you to another neurologist if necessary.

With good wishes,

Ros

[Charts in reply to lupus-support1]

Yeah that's what I was thinking. At least they can say I've seen this before or no don't sound like aps to me.

[Star13]

As they do not like us to make comments about specific Doctors on this forum I won’t pass comment about Prof Bhatia and will PM you instead.

[Charts in reply to Star13]

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!

[Star13 in reply to Charts]

Yes he was my Dr at Guys and St Thomas and is very good.

[Greenmil3]

Or pop along to the lupus centre and get a referral from prof d’cruz as he appears to know the whole of the London medical world

[Fra22-57]

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

[Charts in reply to Fra22-57]

What's he like? This is who I'm looking to see.

[Fra22-57 in reply to Charts]

Lovely man

[Greenmil3 in reply to Fra22-57]

At last found another cerebral APS person there is so few of us x

[Fra22-57 in reply to Greenmil3]

I wish it was not a something I belonged to but life dishes out surprises 😕 🫶

[Greenmil3 in reply to Fra22-57]

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

[Charts in reply to Fra22-57]

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

[Fra22-57 in reply to Charts]

My bloods confirmed APS but scan did say micro clots. Another rheumatologist said there are lesions on my brain too

[Charts in reply to Fra22-57]

Ah I see. Mine not showing anything up on scan so really don't know if this is aps related

[Charts in reply to Greenmil3]

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

[MaryF Administrator]

I would opt for a Hughes Syndrome/APS specialist, as it is part of the condition at times. MaryF

[Ignacio182]

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.

Looking back, it was obviously related to aps

[rankin1st]

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.

[Charts in reply to rankin1st]

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

[rankin1st in reply to Charts]

Headaches, memory issues, sleep movement disorder, epilepsy, vision issues, ataxia. Obviously not all aps related though. Hope you get on well with the prof

[Charts in reply to rankin1st]

Thank you

[rankin1st in reply to Charts]

Hope you got on okay seeing the consultant

[Greenmil3 in reply to rankin1st]

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.

[rankin1st in reply to Greenmil3]

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 ☺️