i have many things wrong with me but ... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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i have many things wrong with me but i don't know if i have Hughes syndrome but it is in my family


I have had a Dvt also pulmonary Embolism miscarriages migraines zigzags a lot, extra cold circulation problems in my feet and legs, pain in my knees and hips am 45 yrs old and until 3 years ago was pretty fit playing badminton squash weight training won a few competitions in my 20's. I forget things all the time constantly worrying why i keep forgetting things. My IQ was really good until a few years ago my sister an mum had problems with their blood also. Mum died of a brain haemorage and my 42 yr old sister last year. Feel like the doctors are ignoring me this is why I am here.

8 Replies

Hi there, and welcome, sorry about your travels in the medical world to find some answers, an awful lot of us have had this. Please let us know where you are located, this way we can help you with more detail. In the mean time, there are many medical papers on the HSF charity website easy to download or email to your GP. I had to do all this. You will find plenty of help on this site, and you also tell a very familiar tale. Mary F x

lizzybabe in reply to MaryF

Thank you for you comment I live in Southport Merseyside

MaryFAdministrator in reply to lizzybabe

Hi there, other members will give you more detail now, who live nearer yourself, and I have made an inquiry regarding our data base of professionals which is currently nearly completed. You will need to chip away at the professional you trust the most! I took books, papers, articles to all of mine including my children's paediatrician, it did the trick. Some people go to London Bridge privately just to get it sorted whilst they await the NHS catching up. Hopefully you will be able to get some clarification soon. Mary F x

lizzybabe in reply to MaryF

I was on Warfrin and was healthier happier and my circulation was much greater to cope with. My legs and feet are getting painful an stiff all the time and the migraines are not always copeable but i have to manage though no choice I did go for one trust last year a blood est but my sister says I have all the signs like her but with some differences. The migraines have been since i was very young. when i was pregnant the first time i was bleeding nearly all the time was on bed rest and i just want answers don't have a great trust for Doctors as they were saying there was nothing wrong with me even went i found out later i had a DVT and when I was coughing blood they said I had a viral infection yer right it was Fatal nearly I had a blood clot in my lung. No trust for doctors at all. was on Warfrin for 7 months the last 2 months were balanced at 15 mgs then they took my off it. I actually felt healthier on the warfrin and my circulation was much better my memory seemed much better too. I am sitting here with 3 pairs socks on wrapped in a blanket and they pain my legs and feet. And the doctors say there is nothing wrong with me.

Please can someone help me.

MaryFAdministrator in reply to lizzybabe

Yes we can help, you can see above what I have suggested about printing out the papers and things for your GP, and then you can push to be referred to your nearest specialist with APS knowledge. Mary F x

Hello and welcome.

As Mary says there is a lot of information on the HSF website that you can print off and show to your GP.

Many of the symptoms that you describe are familiar to my history of APS and will, I'm sure, be familiar to many on here.

Your GP needs to give you some very simple blood test, the information for which is on the HFS website and, if positive, these will confirm that you have APS. However, Mary and many other have what is called seronegative APS where their blood tests are negative but they have been diagnosed by virtue of their symptoms alone; this is a more difficult one for Drs to get their heads round.

Best wishes and good luck. let us know how you get on.


I hope you get to see somenbody soon, my circulation has been tons better since warfarin and aspirin combined,yet i do get very cold. If you can i would suggest you go to see a heamotologist and then get him to refer you to Dr Khamashta in London St Thomas' - mine was showing up in bloods and i was still left wandering through the system and strokes unnoticed. Hes confident enough to diagnose even without the blood tests,and it seems very plausible that you have something amiss and based on your family history. If your symptoms get worse go to a& e - sometimes its the only way to speed things up if your really worried that something is seriously wrong nowx

Hello Lizzybabe, I think doctors should notice that something is happening in your family. They should make you tests!!

In my case, I had a huge clot in my brain suddenly. They made me special blood tests and APL antibodies were extremely high (I was 27)

My aunt (from my father family) has Mixed Connective Tissue Disease, Sröjen, Raynaud, rheumatoid arthritis,.. and her aunts and grandmother (elder or died people) used to say "I have no tears and split" (sröjen), and you could see their rheumatoid arthritis in their hands too.

Now I am 29 and this week I got my first ANA positive (and high too)....

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