Could Hughes syndrome be the reason for my miscarriages?

[kimlouiseb]

Hi

I've recently found this group and found the info on here very useful.

I have two boys aged 5 and 7 - had no problems with either pregnancy.

Problems started in Oct 2010 when I had a late miscarriage at 20 weeks, followed by two early miscarriages in 2011 and two weeks ago another 2nd trimester loss at 15 weeks.

I've had lots of tests done, including the Lupus Anti-C, Anticardiopilins and Anti-nuclear antibodies, which have all been normal.

I was on low dose aspirin for my most recent pregnancy and am now convinved thats the reason I got further in that pregnancy.

I don't have consistent symptoms, but had a series of migraines that started when I was pregnant with my 2nd son and lasted for a few years,

I suffer with lower back pain every now and then and also have tingling in my hands and fingers from time to time.

I've read that its possible to be seronegative and never get a positive test result - but am also worried that maybe I'm just trying to find something to fit, as I'm so fed up of not knowing whats wrong.

Would be interested to know if anyone else has had a similar experience.

Thanks for reading

[MaryF Administrator]

Hello there and welcome, it is possible to have seronegative hughes and the same for Lupus, you symptoms do sound very familiar. I have seronegative hughes as do my sisters. You should if possible get yourself referred to a rheumatologist who understands this condition. Sorry you have had a tough time... and you will get lots of replies from people on here who will tell a very familiar tale. Best Wishes. Mary F x Also plenty of info on the Hughes Syndrome Foundation Website, including some on the different manifestations of Hughes and pregnancy x

[Suzypawz]

Hi, as Mary says, it could be very possible, you should see someone that will understand these symptoms & the conditions & see if it gives you any explanations for what has been happening, its best to find out if this is the reason.

I am sorry for your miscarages.

I hope you find the answers you are looking for, keep us posted, Sue x

[Storky]

I too am seronegative and had lots of symptoms including a PE and a stroke before being diagnosed by Prof Hughes.

The person to see if you are seronegative would be either Prof Hughes or Prof Khamashta at St Thomas. They are both the experts in this aspect of APS and would be the best people to advise you I think. I would ask to be referred to Prof khamashta if I was in your situation or if you could afford it, you could see either privately at London Bridge Hospital.

Im so sorry for your loss and do hope that things work out for you and you get the answers you need.

Big Hug x

[jessielou]

Hi Kim

Welcome and glad you found us. So very sorry for your losses, I know how much they hurt.

Seronegative Hughes could well be the cause, so as others say either a good rheumy or St Thomas's, or a private appointment with professor Hughes at London bridge.

I really wish our doctors would learn the ambiguity of Hughes syndrome and realise that blood tests aren't the be all and end all,,,...

I hope you get some help and answers hon, I know I felt a sense of relief and peace when I got my diagnosis, it explained the why? Of losing my little ones...

Take care gentle hugs love Sheena xxxxxxx - - -

[kimlouiseb]

Hi again - thankyou for all your responses and support, it does help.

How would I go about getting to see a specialist? especially as I don't know whether I have Hughes or not, Would they see me just based on my history of miscarriages?

Thanks again

[emmaj]

I saw a neurologist and heamotologist because of a stroke who were both willing to diagnose me on the basis of clinical evidence despite recent blood test showing negative. I have had several losses and as they were late ones they did blood tests before i left the hospital and at that time they were active and showing anticardiolipin antibodies - it was still a myther getting diagnosed with aps, though even despite previous positves. Just based on clinical evidence of late miscarriages and a young stroke they were willing to diagnose me, and when i saw a hrheumotology specialising in lupus she said i fitted in with 'clinical diagnosis' - i think yu should try to find somebody who is willing to put there money where there mouth is and do the same, and be adamant that bloods arent the be all and end all of things - like my gp said - i wish you all the luck and sorry for your painxx