help needed

[darceynjo]

Hi I am new here and are a little confused, I recently had a pulmonary embolism, which the doctors put down to having a broken foot, but after reading things on here I wonder if I could have APS. I am a 54yr old woman and about 2 1/2 yrs ago I had a TIA, I have epilepsy which is under control, I suffer a lot of headaches/migraines, aches and pains in my bones mainly my hips. My daughter keeps telling me that I am going senile as I forget alot of things eg what I am going to say, what I need from the shops (I even write a list but forget that lol) I can forget what to say halfway through a sentence I could carry on. I also keep thinking I am going to have a heart attack as sometimes my heart races faster than Hussain Bolt lol. My sleep pattern well I dont have one I can sleep in the day for a few hours on and off then same at night. I suffered a miscarraige many yrs ago. I am now taking warfrain to try to get my INR level at 2.5 it currently is stuck a 2.1/2.2. I would be grateful if somebody could shed some light on this for me Thankyou Julia xxx sorry I forgot to say that I keep losing my balance alot and just lately have been falling due to this

[SueLovett]

Hello and welcome.

What you describe are classic symptoms of APS. If you go to the Hughes Foundation web site there is information that you can look up and also pass on to your GP.

There are also blogs written by Prof. Hughes that you may find helpful to read.

Good news that you are on Warfarin which is pretty much the standard treatment for this illness and will hopefully keep you safe.

Hope this helps keep in touch and let us know how you are doing.

[darceynjo in reply to SueLovett]

Hello and thankyou, I will keep in touch regarding my progress with this Julia xx

[MaryF Administrator]

Hi there and welcome, you appear to be telling a very familiar tale, do please get it all checked out. On The Hughes Syndrome Foundation, many useful papers you can download and take along to GP/Rheumatlogist as first port of call. Also this has been written about many times and also brought up by Professor Hughes quite frequently.

ncbi.nlm.nih.gov/pmc/articl...

Best of luck and please keep in touch so we can see how things are coming along for you,

Mary F

[darceynjo in reply to MaryF]

Thankyou for the above xx

[Hidden]

Hi there,

It sounds familiar to me also. I was much better after Warfarin. But you must keep it higher just like the two wonderful ladies above have already said.

Take care

Kerstin

[darceynjo in reply to Hidden]

Thankyou xxx

[happiness45]

Hi i had a pe two years ago.diagnosed with aps.if my inr drops below 2 i feel really tired.hope you feel better soonxx

[darceynjo]

Hiya thankyou very much for taking the time to reply to me, I live in Sheffield South Yorkshire. I had my weekly INR levels done on tuesday and the nurse phoned me to say that they had dropped from 2.2 last week to 1.7 this week why could this be I have done everything that I have been told to do.

i feel like a bouncing ball up and down all the time, this was one of the problems I had while in hospital that they couldnt get my INR levels stabel. I am so fed up all want to do is sleep or cry. I had a letter from the hospital this morning with an appointment for the Haemophilia & Thrombosis centre, I thought that I would be on warfarin for 6mths then see the chest doctor and that would be it so why do I have to go here am I worrying about nothing Thanks Julia xxxx