Does Hughes Always get worse?

[starships]

I have been newly diagnosed after three miscarriages. Apart from a few headaches when I was in my teens this seems to be all my symptoms.

My mum has had some vertigo, brain fog, TIA's, severe fatigue and was also diagnosed with Hughes although no doctor will put down her neurological symptoms to Hughes as they all think its for younger women with recurrent miscarriage. I digress.

I am 29 and one of my main worries is that Hughes will get worse as I get older and therefore do I only have so many years to enjoy my life?

[Charli84]

This is a good question. I was diognosed at 23 and am now 28. The older I'm getting the worse I'm feeling

Xx

[Rebecca_H]

When i was first diagnosed i just thought 'great I'm going to die from a blood clot & I'm just a ticking time bomb, but i dont feel that way anymore. (i was diagnosed after losing a baby in 2nd trimester in 2011) try not to think like that, you just have to appreciate and enjoy your life. I know its hard at the start but at least you know whats wrong & the knowledge should help. I don't think it gets worse for everyone. Aps affects everyone differently and I definitely go through phases where I feel really good and then I might have loads of migraines & be exhausted. I'm sorry you have had to suffer three times before being diagnosed and I wish you all the best on your baby quest. I have now successfully had a baby & it's worth every heparin injection

[MaryF Administrator]

Hi there, firstly I am pleased you have some diagnosis, and you need somebody with more detail to help you, we do have a list of medical practitioners on our website who have a working knowledge of the condition, and also to check that other conditions are not coming along on top also. Sometimes people feel better when on the right medication, and some do not, and then find out perhaps they have a thyroid condition or sjogrens or something else. However many do well on plaquenil for fatigue, it did not suit me, but does my daughter, do let us know where you are located so we can help further. Mary F x

[Hidden]

When I went to see Prof Hughes he noted that following my diagnosis in my 20s, I experienced very low level symptoms in my 30s which have now escalated in my early 40s. He commented that this was NOT unusual. Thanks to the Hughes site I was able to get more formal help as the symptoms I have experienced more recently did not lead health professionals to believe they were Hughes related.

[starships]

Thank you everyone for your replies. Rebecca you give me hope that one day I will have my own baby although as I am sure you will understand some days are darker than others.

I also think that with losing the babies I feel my life has been on hold for the last 3 years and although not an old mother personally I had really hoped I would be mother in my mid-late 20's. It just worries me that if I spend another 3 years trying for a baby then I won't actually get to enjoy baby when it arrives if I get anything like the symptoms my mum has. I also wouldn't want to put a child through this themselves or deal with a severely ill mother (although I love my mother dearly)

I think you are right in the fact that forewarned is forearmed and I would appreciate some more information. I live in North Yorkshire (Skipton) so the nearest towns are Leeds and Bradford although it isn't too far from Manchester or Liverpool. If anyone has any good suggestions for a Dr that understands the complexities of Hughes in my area I would be very grateful. I saw Raj Rai in January regarding the medication in my next pregnancy. But he only deals with the pregnancy side of Hughes and so maybe speaking with someone more knowledgeable would be just as helpful with regards to the non pregnancy symptoms.

x

[Hidden in reply to starships]

Hi Starships,

My consultant is Dr Sam Ackroyd at Bradford Royal Infirmary. He is an excellent specialist and has specific knowledge of Hughes. He asked my permission in January if he could present my case at some kind of conference where he was specifically talking about Anti-phospholipid Syndrome aka Hughes Syndrome. So I would suggest that you try and get a referral to Bradford.

Best of luck!

[Hidden in reply to starships]

Hi Starships,

I forgot to mention that Dr Sam. Ackroyd is a haematologist.

[starships in reply to Hidden]

Thank you that is really useful

[MaryF Administrator]

Hi there, having read what you have mentioned above re your location:

Professor Tin Chiu Li

Consultant Obstetrician

Department of Obstetrics & Gynaecology

Sheffield Teaching Hospitals

Jessop Wing, Tree Root Walk

Sheffield, Yorkshire S10 2SF

Telephone: [phone]

Dr Michael Martin

Consultant Rheumatologist

Department of Rheumatology

St James' Hospital Leeds

Beckett Street, Leeds

Yorkshire LS9 7TF

Telephone: [phone]

Mary F x

[starships]

Thank you Mary xx