Coping with Hughes

Hi

I was diagnosed with Hughes syndrome I'm April after a second miscarriage.

After finding out what had caused them I felt relief that I wouldn't have to go through all the pain and heartache again.

After seeing the obstetrician I felt positive that all I need to do is lose weight and then go on clexane injections once pregnant.

However that was all the information I was given.

Towards the end on may I woke up with severe headache which was more like a.migraine, thinking that It would just go I slept the rest of the day.

The migraine didn't go and went to the gps. I informed the gp about having Hughes syndrome as I know it causes bloodclots. The doctor just told me to go home and rest if it hadn't gone by the end the week to come in.

Well to cut a long story short, the migraine went for a week and cameback. I went to the doctor 4 times to be.told to rest.

I'd explained I had tingling down my arm and face but was told I'd more likely get a blood clot in My leg than head.

So after that I went to hospital as.it wasn't going.

After three weeks.I was sent for an Mri and was.told it would be three weeks for the results.

After 3 days I had a call to say Id got Venus sinus thrombosis which was a clot in the brain and needed to be treated with walfarin and clexane.

I feel so lonely and upset that no one listened to me of how bad it was.

I should be lucky I'm Alive and.only.have some memory problems but at the age of 24 with a small child and a caring partner it all seems too much to cope with.

Has any one else felt like this?

Sorry for the long post!

2 Replies

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  • Hi there, sorry you have had such a very rough trot, I had similar non listening exercises at your age. You must have a Hughes Syndrome/APS specialist referral off our list of recommended ones as this will help your GP as well as yourself. Do email your GP the Hughes Syndrome Foundation website and also the footage and transcripts of the recent debate in the House of Lords, plus films of our recent Patient's Day at St Thomas' this way they can become educated re this disease. You can email it to the secretary of the GP marked for the GP's attention. I enclose the links for you below. Please do not feel lonely we are all here on this forum in the same boat.

    Tactful wording of the email, that you yourself have found the information from the charity and forum really helpful in getting you up to speed etc.

    1. hughes-syndrome.org/

    2. hughes-syndrome.org/self-he...

    3. youtube.com/playlist?list=P...

    4. publications.parliament.uk/...

    MaryF

  • Hi Mary,

    I have read parts of no 4 above.

    Fantastic how she writes about APS (several pages)! Hope it means a great deal for the future awareness of this illness.

    Kerstin

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