New Post, community only please

[Dawnm10]

HiI found out I had APS during my 8th pregnancy in 2006. I had PEs.

Fast forward to 2024.

One of my adult daughters had PEs in pregnancy, horrific treatment from hospital, which was minutes from losing both my daughter and her baby (at 39 weeks)

I'm now waiting to have a genetic test for APs as I was originally told it was not genetic. The haematology department originally refused to see me saying it wasn't urgent. I said, yes , you will.

I am adopted and no medical history.

Any advice please.

How does ApS relate to ehlers danos syndrome, underactive thyroid, POTS and CRPS, pernicious anaemia.

Any information please or anyone who has been through this.

Thanks

[GinaD]

one side drippings can be a sign of a stroke. Did anyone give you a diagnosis for that?

[Tennisbum]

Hi !

But from across the pond. I also have no medical history and was placed in some sort of adoptee or foster care. I have found the medical profession Likes to confirm APS with your medical family history Differential diagnosis

I assume that I was relinquished bc of my diagnosis they used to advise parents to do so. This forum has lots of people with clusters of autoimmunes just as you do.

I think one of the admins was sent by her docs here to see Dr Hughes. She might be able to give you better advice. Universally, I think, we all agree to try to see only docs who have experience and knowledge and will even accept such a diagnosis. Otherwise, you can end up seeing many and getting nowhere. We even have encountered doctors who have spent years with the same diagnosis and frustrations. Thank goodness you and your daughter and newborn survived

You Tube has some of Dr Hughes conferences which help to explain what it is and is not . This is considered one of those rare syndrome's. NORD also might be a place to look at online. Very difficult to navigate —- but “doable “.

Congratulations on the new addition!

[KellyInTexas Administrator in reply to Tennisbum]

Yes, I was sent to see dr Hughes by both my GP and neurologist, who worked together on my case. Dawnm10

[MaryF Administrator]

Hi all these diseases are connected as often autoimmune diseases come along in groups. I hope you get to the bottom of it all. What you are describing is not that unusual, but unfortunately there is at times a profound lack of up to date medical knowledge out there. MaryF