Confused regarding symptoms

[bevjane74]

Hi there everyone, had a diagnosis of aps in november and had my second conformation blood test yesterday my haemotologist seems to think the symptoms I have the blood test will probably be positive, I'm just wondering because I have lots going on is there a list of symptoms so I can compare and see if what I have going on is aps related or something else as to be fair my haemotologist seems to have no idea which of my conditions are linked and which aren't, things she has said aren't linked when I've looked it up in actual fact are and I'm getting rather Confused, I feel like I need to double check everything I'm being told and find out things for myself, just think if I went there with the information it may be able to help other patients and also help the haemotologist understand aps a little better

Thanks in advance

Bev x

[Manofmendip]

Hi Bev

Who is managing your APS? Where are you from?

Dave x

[bevjane74 in reply to Manofmendip]

Hi Dave,

I'm in Gateshead near Newcastle upon Tyne and just the haemotologist, I'm currently taking warfarin due to a dvt in November last year and that so far is the only management I'm getting I wasn't aware there was more

Thanks

Bev

[Manofmendip in reply to bevjane74]

Hi Bev

Have a look at this link:

hughes-syndrome.org/self-he...

Try to get a referral to an APS specialist in the North East.

Best wishes.

Dave x

[MaryF Administrator]

Hi there please arm her with the full information of the Hughes Syndrome Foundation charity website, let me know if you can't find the link as the symptoms are listed on there in detail plus associated conditions. Tell her also that many have thyroid problems, also Sjogrens and at times Lupus. Also let me know if you need any further information as I can normally find medical papers. MaryF

[bevjane74]

Thank you both for your replies I was without internet all day yesterday so wasn't able to respond,

I would appreciate it immensly if I could have the link that you refer to Mary that would help me a lot

[MaryF Administrator in reply to bevjane74]

Hi there: hughes-syndrome.org/about-h... and I would thoroughly read the entire website! Do also write your history down in brief bullet points also symptoms to date, to take to any appointment. Best of luck. MaryF

[bevjane74]

Thanks a lot Mary

I've done this but the haemotology department at my local hospital see very little of it being linked though I am changing my care over to another hospital and from what I've heard their haemotology department are a lot more clued up so hopefully I get resolution soon

Thanks for your help again

[MaryF Administrator in reply to bevjane74]

Yes you do need a specialist with detailed knowledge such as those on the list that the charity website displays. MaryF

[Lhrlovesmar]

Hi, Bev I'm in the U.S. and have APS. Bev, have you had any Deep Vein Thrombosis (blood clots in your legs), or have you had a PE (pulmonary embolism-clot in lung), or have you had any unexplained strokes, do you have any red blotches on your skin, how is your short term memory, all these are evidences of having APS. All your doctor needs to do is perform an inexpensive blood test to confirm that you indeed do have the APS antibody. My suggestion-find a doctor that HAS heard of Antiphospholipid Syndrome. God's Blessings to you, Bev!

[bevjane74]

Hi yes I've had 2 clots in my leg memory is shot to ribbons I've had both blood tests done and it was confirmed on the weekend that I do have aps but my trouble is the haemotologist doesn't seem to think epilepsy balance problems memory problems ear problems and joint pain are linked to aps I have asked to be referred to a different hospital to one that understands aps a bit more and hopefully get some more help

[Lhrlovesmar in reply to bevjane74]

Bev, you really need to locate a doctor who is trained in auto-immune disorders. LHR

[Lv84]

What do I need to do about this short pain in the left side of my head I been having this pain for about a year now my left ear is stop up also I think it's getting worst I'm scared I need some answer please

[Lhrlovesmar in reply to Lv84]

Lv84, you need to go to the hospital and get an MRI of your head, asap! LHR