Should I go to London Bridge to see the Prof?

[42Lilac]

I have had 2 weak positive for LA at my local hospital.Went to St Thomas blood test clear MRI no damage except MS it was the Neurologist who spotted the livedo rash and referred me.i have had no clots or babies but have the symptoms falling over as if pushed by someone.Havehad cluster headaches chronic for years St Thomas said try baby asprin idid and it worked?St Thomas said MS patients have weak positive for LA anyone else had this?I have blurred double vision memory very bad wrong word etc.I feel seeing Prof Hughes at the London Bridge may be where I need to go?What does anyone else think? Is it very expensive to get his opinion? Thankyou

[MaryF Administrator]

Hi there, I did this, and yes it is a touch pricey but it is mainly the tests, take your most recent ones along, then the main expense will be the appointment slot with either with Professor Hughes or Professor Khamastha who has the shorter list, but also works at St Thomas; Hospital. Best of luck. Mary F x

[42Lilac in reply to MaryF]

Thankyou I feel this is the only way to put my mind at rest

[MaryF Administrator in reply to 42Lilac]

It should not be like this, with obvious clinical symptoms but unfortunately sero negative patients can at times have a rough diagnosis.. even though many pass a test in the end! Mary F x

[Hidden]

That's a difficult one as it was originally felt several years ago that a lot of MS patients were wrongly diagnosed. However, over the fullness of time, it has transpired that many MS patients do have the antiphospholipid antibodies as well. No one knows why at the moment.

Professor David D'Cruz is the real specialist in this and he works at both St Thomas' for the NHS and one afternoon at the London Lupus Centre - I'm not sure if you've been treated by him?

[42Lilac]

No I haven't seen him

[Hidden in reply to 42Lilac]

Perhaps you could ask your GP to refer you to him?

[42Lilac in reply to Hidden]

Thankyou for your help

[lupienat]

In your position I would go and see Prof Hughes if anything can put your mind at ease or treat you if you do have aps as well. He is the one who will provide you with an honest, qualified, knowledgeable decision. You pay after your appt at London bridge. Prof Hughes is also aware that self paying patients it is expensive so he won't ask you to have any further tests unless necessary. I wish you well, keep us updated xxxx

[42Lilac in reply to lupienat]

Thankyou I will let you know in due time how I get on.This website is the best thing ever as you don't feel it's only you and everyone is so friendly and helpful.Thanks to everyone xxxxx

[jean48]

I was diagnosed was diagnosed with MS. I then saw a MS specialist and he agreed that it was the antiphospholipid antibody syndrome. It sometimes looks like MS.

Jean

[42Lilac in reply to jean48]

Unfortunately all the tests came back positive for MS I have a lot of damage to the brain which was picked up on the MRI scan but thankyou for letting me know that it is sometimes mis diagnosed as other people will be glad to know this xxx

[MaryF Administrator in reply to 42Lilac]

And sometimes people have both - have had that on here once before. Mary F x

[Salty]

I would see Prof Hughes. You are very lucky, you live in London so you won't have to pay to fly there or for a hotel. I don't remember exactly but it's about 270 pounds for the visit. Your life is worth much more than that! Trying to get in to see Dr. D'Cruz or Dr Khamashta at St Thomas' would also be a good option.

[42Lilac in reply to Salty]

Hi sadly I don't live in London and flights plus a carer to push the wheelchair plus hotel have to come into it but I still feel going to London Bridge is the way forward thankyou for all your help and advice xxxxxx

[Salty]

I am glad to hear you are likely going, Manxcat! It was absolutely worth it for me. Good luck and best wishes.

[mitzygaynor]

Hi, I have seen Prof D'Cruz at st. Thoms. Had heaps of tests, ANA raised and got to see him again in August. Diagnosed with Ms from brain lesions seen on MRI 1yr previously. I had raised ACLA 15 years ago following recurrent miscarriage and was told I had Hughes Syndrome. I also suffer aura migraine. Prof told me that my diagnosis of MS is definate as there were improvements on my 2nd MRI brain and this doesn't happen with APS.