Numbness down the right side of my face - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Numbness down the right side of my face

Noah2010 profile image
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Noah2010 profile image
Noah2010
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19 Replies
MaryF profile image
MaryFAdministrator

Hi there, has this just come on? Any other symptoms? Also how is INR doing? I think you should go and have a check up... nearest ER/ Casualty, it may be nothing, but better to be secure in managing your symptoms. etc. Mary F x

Noah2010 profile image
Noah2010 in reply to MaryF

No it there awhile it happen to the other side a few times but when it happen to the other sider I couldn't fell my face went to the doc and er but couldn't find why this is happen to me.

MaryF profile image
MaryFAdministrator in reply to Noah2010

Well please keep a close eye on it and if concerned do have another check up. Probably others have had this, I have not had this symptom myself. Mary F x

Manofmendip profile image
Manofmendip

Hello Noah

I agree with Mary, this needs looking into.

I have had this in the past with migraines and with TIAs.

Please get it checked out and let us know what they find.

Are you on anticoagulants and, if so, what is your INR at the moment and what is your target range?

Best wishes.

Dave xx

Noah2010 profile image
Noah2010 in reply to Manofmendip

Thanks Dave my name is Louise I just used that as a user name. There did all the tests in hosiptal last year and found Notting and but it down to headache but this is goin on over a year and a half there has to be a reson. I need to know and get it sorted.

Manofmendip profile image
Manofmendip

Hi Louise

You do need to get it sorted. Possibly an MRI scan may be needed.

Who manages your APS? Where are you from?

Dave x

Noah2010 profile image
Noah2010

From Ireland what's aps?

MaryF profile image
MaryFAdministrator in reply to Noah2010

Hughes Syndrome or sticky blood. Mary F x

Murphy0866 profile image
Murphy0866 in reply to Noah2010

Which hospital have you been to in Ireland ? - I am there and they vary widely

daisyd profile image
daisyd

APS = Antiphospholipid syndrome which makes our blood sticky hence the need for blood thinning medication most of the time. Asprin Warfarin, Clexane or other of a similar kind.

Hughes syndrome = a Professor who the condition is named after, we all should be really greatful for he discovered it and has done so much for us, giving lectures all over the world! and believing that the Doctors should actually listen to their patients.

MaryF profile image
MaryFAdministrator

And also another forum on this platform for National Migraine Centre: healthunlocked.com/migraine.... We sent you a private message an hour or so back with a link to list of Symptoms for Hughes Syndrome, a suggested read, if you symptoms do not fit into those listed.. you can probably rule it out, and use one of the other forums suggested, let us know how you get on. Mary F x

fitzyc profile image
fitzyc

i live in ireland and attend vincents hopital ..i have aps but that numbness sounds like tia i had one and numbness but couldn`t speak lasted about half hr .., doc`s in vincent`s hopital are all becoming more aware of aps all the young 1`s read it but very few seen it ... but all pretend they c it everyday , iam 40 now took 8 yr`s before diagnosed , hope it help`s i`d say they could put u on warfrain keep in touch ,

Noah2010 profile image
Noah2010 in reply to fitzyc

I went to Beaumont and did ct scans blood test and they said it's down to migraines this is goin on over 2 years just wish I could get some poper answer. My hole face went a few time couldn't speak for over a half a hour. They tought it was bell palsy. I just want answers.

fitzyc profile image
fitzyc

hi what made u see this site u diagnosed with aps?,

Noah2010 profile image
Noah2010 in reply to fitzyc

Well I got more answer from here.

DataOdyssey profile image
DataOdyssey

Hi Louise, sorry to hear about your numb face symptoms. I have this on a regular basis too. In my case, usually the left hand lower side of my face will go numb without warning. This is accompanied by my lips going numb as if I have been injected with anaesthetic in the lips. Is this identical to what you have? I recognise this as the symptoms of a TIA or mini-stroke which I tend to suffer from on a regular basis. Especially if my INR drops drastically without my knowledge and sometimes even if it doesn't. You definitely need to seek the attention of rheumatology / neurology specialists who will investigate further - and please don't let any impatient doctors fob you off. This condition once put me in hospital for 9 days - it was aggravated to the point where I had speech difficulties - I was mispronouncing words or even inserting the totally wrong word during regular speech! Fortunately I was taken seriously enough and hospitalised. Good luck with the investigations.

Best wishes and good health. Tony.

Lure2 profile image
Lure2

I have had this. It is TIA. I have had microclots and they can not see it on MRI. This was 12 years ago. I have now Warfarin and selftest. Never feel it again after warfarin.

Take care. Se an APS doctor! Kerstin

tim47 profile image
tim47

Familiar to me too, but on right hand side, affecting nose lips as well, slight 'chilling' too as I recall. Eventually diagnosed as multiple TIAs Advice varied, on one occasion to take soluble aspirin, which helped, another time led to full investigation and finding of hole in the heart which, with Hughes, created opportunities for clots to pass through heart and cause TIAs. (Now sorted) Continue to press your doctors - and if you go on warfarin, it needs to be the right level- I had my TIAs with an INR of 3.3

Lure2 profile image
Lure2

I had it too on the right side of my body. Even the right side of the tongue was without feeling. At first it was enough with an aspirin but then more neurological symtoms started and pulmonary hypertension and then I decided to begin with warfarin. I have all the antibodies there is for APS and also high or mediumhigh rate every time since 2002.

Kerstin

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