Sticky Blood-Hughes Syndrome Support
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Off to guys today

My appointment in Beverley Hunt's clinic is this morning.

Having been tested in June by kings and dx with very high antiphospholipid antibodies, put on warfarin, I have been feeling much better in my head though I still keep tripping and stumbling.

Anyone have any experiences to share about attendance at the clinic, questions to ask, etc?

I was under kings since dvt in 2002 and they have sent across my notes, I have written down previous medical history to take with me.

Anything else?

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Hi, just your history and symptoms in bullet points, she is very thorough and helpful. MaryF

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Thank you. I have a bit of a phobia about new doctors so reassurance is appreciated.

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Hi Fusch,

Hope you are on an INR that is high enough as you are still "tripping and stumbling" as you say.

At least I (also have all the 3 antibodies and in high titres) noticed a great difference in my neurological status very soon after I started warfarin.

What therapeutic level of INR are you put on? If too low ask your APS-Specialist to have a higher level. We usually need an INR of around 3.5 to feel at our best with our APS symptoms.

Good luck today!

Kerstin in Stockholm

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The range is 3-4 though the GP disputed that for ages

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Morning I was seen at St Thomas's and she is lovely

For balance problems I now take placqunil which is a wonder drug for me along with Warfarin, my balance improved within 3 days

As long as your history etc like Mary said

I find it useful to write a list of questions so I am not thinking about what I want to ask, I took my Husband with me which was helpful, I would have got lost without him

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Don't be worried, she is lovely! I went for the first time two months ago, spent over an hour with her (she is very thorough). I've been back since to her st Thomas's clinic. Take your list with you and any doctors letters, they'll photocopy them x

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Appt went well. I handed over previous bloods and they have requested a copy of my MRI.

The bloods done by kings were

IgG cardiolipin antibodies of 258 U/ml, IgM cardiolipin antibodies of 42 U/ml and β2GG in excess of 532 U/ml, with β2GM 18 U/ml.

So strongly positive. With my history, is def aps. Possibly also b12 deficiency might explain my tripping over all the time

I go back in 4 weeks time

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Good! try to selftest and keep the INR over 3.5 as you are allowed to also.

Kerstin

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I will look into self testing as soon as I can afford to buy the kit

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Good. I am so glad you will!

Kerstin

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