help needed: Hi I am new here and are a... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,397 members10,601 posts

help needed

darceynjo profile image
8 Replies

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

Written by
darceynjo profile image
darceynjo
To view profiles and participate in discussions please or .
Read more about...
8 Replies
SueLovett profile image
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 profile image
darceynjo in reply to SueLovett

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

MaryF profile image
MaryFAdministrator

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 profile image
darceynjo in reply to MaryF

Thankyou for the above xx

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 profile image
darceynjo in reply to

Thankyou xxx

happiness45 profile image
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 profile image
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

Not what you're looking for?

You may also like...

Urgent help needed

I am currently in hospital. I have had severe APS for many years & manage on high dose warfarin. I...

Help with headaches/pain in back of head and neck 😩

Hi i was diagnosed with APS 3 yrs ago and i test possitive for lupus. I self test and take warfrin...

Desperate, Can You Help Me?

I was diagnosed 10 years ago after a blood clot in my carotid artery. While recovering I spent my...

Help with Vitamin K foods

Hello I am from Vancouver Island and had Open Heart Surgery in 2022. After my surgery they put...

Help Advice Needed

Ive had 7 PE's even while taking warfarin. Had a stroke and a number of TIA's and a Heart attack....