Sticky Blood-Hughes Syndrome Support

I tested positive for lupus anticoagulant, but retest a few months later is negative. I have MS like sx - not dx with anything at the time

Other than possible MS - followed by neuro for the past three years - follow up MRI show no new lesions - (have 13 or so small, scattered). Do docs usually do a third test if one positive, one neg, and patient has sx of aps?

Thanks in advance.

CArol

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Hi Carol

It is often really difficult to distinguish between MS and APS, and some people will have both conditions. I suggest you try to get a referral to Dr David D'Cruz at St Thomas' Hospital as he is the leading expert in the UK in this field.

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Thanks Kate, but I live in US. Hard enough to see Docs here!

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I too am in the US - where are you?

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I live in upstate NY. I found a Doc in NYC who specializes in APS - he is semi retired and I could see him for s consult - but he doesn't take my insurance (not that big of a deal - I could pay out of pocket - I believe his office said it would be $550.) - but since I'm not sure I have this - I'm not even sure he would see me.

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Ahh - that's not much help to you then!

I know APS-ACTION has some US doctors on its board so maybe it would be worth checking out their website? Just google APS ACTION - good luck :)

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Thanks again Kate. I will check this out.

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H i live in Somerset do go through my GP to ask for a referral? I have many symptoms of MS and APS but cannot get a diagnosis, Im on lifelong warfarin for factor five lieden (i had blood clots in both lungs 22yrs ago when i was 31, since then i have had TIA's numbness stumbling rag doll fatigue etc, would love to get to the bottom of it, I am an RMN and struggling with work now have a very supportive team around me and have dramatically cut my hours, any help or advice would be very welcome. Dawn xx

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Hello Dawnie,

I also live in Somerset, about 9 miles from Taunton.

I was initially referred to London Bridge Hospital by my GP. I had to go privately as no fuding available for me to go to London. I have since been transferred to NHS and now go to St. Thomas's although I don't know how long this will last.

If you want any more information or to talk pm me and I will give you my number.

xx

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Hi Sue Thank you for your reply, it would be great to speak to someone who has similar experiences i seem to have so many! how do i pm you xx

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Hi Dawnie,

Oh dear I don't know either.

I haven't really got to grips with the new format of the website.

The old one was much more user friendly.

I will try to found out an get in touch. Hopefully someone can help.

xx

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