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.
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.
Thanks Kate, but I live in US. Hard enough to see Docs here!
I too am in the US - where are you?
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.
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
Thanks again Kate. I will check this out.
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
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.
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
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.
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