How often do you need to get checked?

[kittykat2881]

Ive been diagnosed with Hughes Syndrome around 5-6 years and kinda just been left. Is that normal or do you need to be checked every so often?

[Mystynzl]

I think the check up thing is dependent on the severity of your symptoms. I have had multiple blood clots and other effects and I have a blood test each week and a doctors visit once a month. I would suggest that you have a check up if your not sure. I am sorry to hear that Hughes has cost you two babies. I was only diagnosed last year and have had pulmonary embolis,TIA's,DVT;s and multiple mini strokes. To make you feel better prior to my diagnosis I had multiple miscarriages. I am however the proud mother of two sons..(grown ups now). This condition can be fickle...and then some...so get a check up just to be on the safe side......HUGS

Mysty

[kittykat2881 in reply to Mystynzl]

Thank Mysty,

My doctor thought i had a mini stroke about 2 years ago but again i was left.

I know what we both went through is horrible but least you have two sons.. hopefully one day i'll have a couple.

I have made a appointment on Monday at my new doctors to get referred back up to Kings College .

Fingers Crossed

KATE

[Lesley_D]

Hi there, I would say dependent on your symptoms (if any), and if you are on any form of anticoagulant therapy? If you are symptom free, feel well don't worry too much. Do you have specialist that you see at all?

Smiles

Lesley

[kittykat2881]

hi Lesley,

What is anticoagulant therapy?

I think the only main symptom I get is pins and needles and dead arms legs fingers etc really really easy

[jessielou]

Hi Kate

anticoagulant therapy is the use of blood thinning drugs such as warfarin, in the hope of preventing blood clots, also heparin which works slightly differently but it too stops clots.

I understand you take aspirin this is used as a preventative measure, also is thought to reduce risk of strokes n clots.

I would say a definate referral to get checked out especially in view of you thinking of having a baby.

Here when you need us.

Take care gentle hugs love sheena xxxxxxx

[kittykat2881]

Thanks Sheena,

The doctor did say if i was ever to get pregnant i would be put on warfarin and yes i do take asprin every day

Thank for letting me know

Kate

[Manofmendip in reply to kittykat2881]

Hi

Warfarin is toxic to the unborn baby, I think you would be put on Heparin.

The tingly numbnes is something that should be treated with anticoagulation I think.

Best wishes.

Dave