Update after latest Guys appointment. - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Update after latest Guys appointment.

Greenmil3 profile image
9 Replies

It maybe that I say goodbye to all here as I’m being taken off warfarin as although I am lupus anti positive in all but one blood tests both the professor and I agreed the warfarin was making no difference so possibly asymptomatic! Also my latest MRI shows a continued increase in my white matter lesions so being referred to Dr Paul Holmes and it looks like it might be MS instead of APS or something completely different. The

Prof agreed he may have looked at symptoms plus blood and made a slightly wrong decision Re the diagnosis! On a brighter note he agrees may have sjorgens!

Will update after there has been a radiographer meeting to discuss my MRI’s and my neurology appointment but as my first line said may be needing to switch groups!

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Greenmil3
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9 Replies
Wittycjt profile image
Wittycjt

I dont understand i thought sjogrens developed because of APS not instead of please educate me

Greenmil3 profile image
Greenmil3 in reply to Wittycjt

Not sure myself yet sorry

Wittycjt profile image
Wittycjt in reply to Greenmil3

Thank you

HollyHeski profile image
HollyHeskiAdministrator in reply to Wittycjt

Sjogrens is an autoimmune disease of its it's own, you can have primary APS or primary SS, without the other. It is also common to have both, with one being the primary and the other being secondary. You dont have to have APS to have SS.

Greenmil3 profile image
Greenmil3 in reply to HollyHeski

Thanks for the clarification

KellyInTexas profile image
KellyInTexasAdministrator

I can tell you with certainty that dr Holmes knows a lot MS and APS, and if you have both concurrently ( don’t forget, that’s always a possibility) he will be able to identify that also.

If you have both running together, one will likely be dominant ( perhaps MS) and the other mild- but aggravating the primary disease.

That’s great news-hope to improve!

Greenmil3 profile image
Greenmil3 in reply to KellyInTexas

Thanks for your continuing support

Peecue profile image
Peecue

All neat wishes in discovering what is going on

Stereolover profile image
Stereolover

Hi I have MS & APS. Maybe you don’t need Warfarin but I’ll be surprised if you’re taken off blood thinners. I take Clopidogrel for APS and it’s something I hope I’ll always take.

Good luck!

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