I have been undergoing tests for ms and they have been negative, but i have been having transient ischemic attacks and all the symptoms of

Ms as well as having 2 mildly positive blood tests for IgM cardiolipin, which when googled suggests aps, I also have a history of pulmonary embolism and have had one child at 34 weeks and waters broke at 20 weeks with another pregnancy, i do also have elhers danlos syndrome, i have been referred to a heamatologist what are your thoughts on wether i have this aps please ? I am worried

12 Replies

  • Please don't be worried. You have already been dx with EDS which s a very complicated condition. It's possible that the problems you are experiencing are all part of that. Have you ever been to a proper specialist or centre of excellence for that condition? If not I would strongly suggest that you do so. Many of the problems that we see with patients on here is about getting correct dx and being sent round the houses. From what I am reading here it would seem that you are having the same issues.

    I don't know where you are based but I know that the National Hospital for Neurology at Queens Square in London has a good clinic for EDS. if you are happy with that dx and want to move on then obviously don't go down that road but if you haven't been to a specialist centre like that I would do that first.

    Then if they don't sort out the present symptoms I would ask to see an APS specialist in your area, a list of which can be found on the HFS website or on here pinned on the posts at the top of the page under category, who would be the best person to rule it in or out. Good Luck and do let us know how you get on. X

  • Thank you so much for your reply, I have been under various neurologists and rheumatologists and was diagnosed with eds many years ago but apart from the odd scan now and again to check heart valve's and aorta nothing else has been done, I do have mild heart failure i presume from the eds, I am 51 yrs old now btw, and have been having ongoing tests for ms for several years due to the symptoms i have been having all apart from the MRI brain scan came back negative for ms but neurologist said I was having transient ischemic attacks and that there was definatley somthing else going on and tested me for cardiolipin i have had 2 tests 8 weeks apart both came back mildly positive so i have been referred to a heamatologist, i know i get a lot of pain with the eds but am wondering if u get pain with this other aps as it has got a lot worse and i keep feeling like i am going to pass out and am bruising badly , unfortunatley for me i am in an area with one of the worst hospitals who are under special measures :( i live in essex and am under Basildon hospital thank you again for your reply x

  • Well here on our data base: Your nearest is Ipswich.. or London, you could make them refer you to St Thomas, or if you wish to go privately you can self Refer to London Bridge Lupus - Professor Khamashta has a shorter list than Professor Hughes. I would push hard for a referral or do you own, many of us have had to to this. Mary F x


  • Thank you so much i will push for a referral to the drs you suggested i would feel much safer in the knowledge that i was under someone who knew what they were doing :) thank you again :) x

  • They may refer you on the NHS: Dr Watts at Ipswich is very good. But to be clear regarding the private route, you will have to refer yourself and pay for this. ie London Bridge. Best of luck. Mary F x

  • Hi there, I agree with the very good advice given above and the list of clinicians with knowledge of APS is definitely a good route. Please let us know how it all goes as MS and APS do sometimes get confused due to similar symptoms. Mary F x

  • Thank you for your reply it is very much appreciated :) x

  • AND having just had a chat with my co ADMIN APsnotFAB, it would be a good idea to thoroughly explore the EDS first before perhaps going off to an APS specialist. these thing are like a jigsaw puzzle, a complicated one, putting the right pieces in. But please let us know how you get on.- as there may be some overlapping symptoms. Mary F x

  • I agree with my two colleagues above.

    Dave x

  • Thank you x

  • I had a P.E. after a knee replacement surgery. When I was going for my check up to my pulmunalogist he gave me a hematologist referral. I did not know anything than about APS. I think you are on the right track. I also agree with the other members.

    Take cake xxx

  • Thank you for your reply :) I had my P.E for no apparant reason i thought i was having a heart attack but it was a P.E :( it was a few years ago now but with the ischemic attacks i am getting worried now just hope they get to the bottom of it quickly, thank you and hope you are well now :) x

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