Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,443 members•10,641 posts

All posts for October 2013

hello, i am new to this and don't know much about HS. My father had HS and died from multiple strokes 3 yrs ago, i tested positive for a

marker 4 months ago and am currently 8 months pregnant, i cant take aspirin as react to NSAIDS, I had a suspected PE and was put on heparin had a VQ scan which...

marker 4 months ago and am currently 8 months pregnant, i cant take aspirin as r...

vikkivermaak

•11 years ago

3 Replies

Best book to buy on APS?

I was diagnosed a couple of months ago (also with SLE) and would now like to read more about the illness. I have a limited budget so am restricted to buying...

I was diagnosed a couple of months ago (also with SLE) and would now like to rea...

MrsMouseSJ

•11 years ago

9 Replies

IBS and Fatigue (my theory that works)

Hi, I just wanted to share something with you – and would love your comments if you are already aware of this or wish to try it. For years I have suffered...

Hi, I just wanted to share something with you – and would love your comments if ...

Missdaisy

•11 years ago

9 Replies

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Anyone with APS and PA1-gene mutation?

Hi guys I was recently diagnosed with having a gene mutation PA1 -4/5g (homogeneous). This is also a sticky blood condition where they body doesn't dissolve...

Hi guys I was recently diagnosed with having a gene mutation PA1 -4/5g (homogene...

apsgirl

•11 years ago

2 Replies

APS and White Matter in Brain & Dizzines

Have any of you had an MRI and been told you have a lot of WHITE MATTER in your brain, from the damage caused by APS I have had APS and vascular brain...

Have any of you had an MRI and been told you have a lot of WHITE MATTER in your ...

Cherrydi

•11 years ago

16 Replies

lots of questions

Hi Guys, I just had another INR (weekly at present) and I have dropped again to 2.1. I can't seem to stabilise, and my dose keeps going up. ( We are aiming for...

Hi Guys, I just had another INR (weekly at present) and I have dropped again to ...

VBAustralia

•11 years ago

6 Replies

B12

hello again - my tests are back stating that no pc antibodies were detected. So I shall continue on the B12 tablets i was given by GP. However I do eat plenty...

hello again - my tests are back stating that no pc antibodies were detected. So ...

stillwaiting

•11 years ago

3 Replies

Is anyone from this group going to the Meeting for APS patients in the South West in Bath?

Moderators, perhaps a poll might help get numbers of people attending from this group

Moderators, perhaps a poll might help get numbers of people attending from this ...

ebulfin

•11 years ago

Be the first to reply

Does anyone have/ had eye problems linked to Hughes!

panda60

•11 years ago

12 Replies

cyclophosphamide

my sister was given cyclophosphamide yesterday morning. Because she's weak and intubated it's very risky and her life is in a big danger. Can you please tell...

my sister was given cyclophosphamide yesterday morning. Because she's weak and i...

helpmysister

•11 years ago

1 Reply

Is Cyclophosphamid only solution

My sister have APS and lung fibrosa, doctors decided to give her cyclophosphamid. They said that it's very risky cause of her condition (she's intubed). Is...

My sister have APS and lung fibrosa, doctors decided to give her cyclophosphamid...

helpmysister

•11 years ago

3 Replies

Advice re bruising to thigh

Hi, just wondered if you could give me some advice, I have SLE, APS, Raynauds, Sjogrens, Vasovagal Syncope, pacemaker, I have had a PE 2 years ago and I have...

Hi, just wondered if you could give me some advice, I have SLE, APS, Raynauds, S...

SammyJ

•11 years ago

9 Replies

If you were booking a private appointment, which one of these consultants would you choose? Prof Hughes, Prof Khamashta or Prof D'Cruz?

I am not entirely happy with the care I am getting locally, mainly as I am not sure that there is a lot of joined up thinking going on, ie high ALT is being...

I am not entirely happy with the care I am getting locally, mainly as I am not s...

Elaine77c

•11 years ago

1 Reply

I have been tested positive for APS after recurrent miscarriages and given a treatment plan if I get pregnant again.

Has anybody had a successful pregnancy having been treated with anti coagulants from 6 wks?

Has anybody had a successful pregnancy having been treated with anti coagulants ...

Rbpw

•11 years ago

8 Replies

I have been tested twice for APS with 2 positive results as a result of recurrent miscarriage. Dr said it will only affect me during preg??

I am not sure how this would work. If tested when not preg then surely it affects me regardless. Very confused, any ideas?

I am not sure how this would work. If tested when not preg then surely it affect...

Rbpw

•11 years ago

4 Replies

APS and bones

I have read up on this on the HSF site today because I am a bit concerned. I have a lot of bone pain but last night I could not move my legs at all - it was as...

I have read up on this on the HSF site today because I am a bit concerned. I hav...

stillwaiting

•11 years ago

8 Replies

Anyone have a negative APS test at start of pregnancy and gone on to test positive mid/later pregnancy?

Come across someone on an unrelated forum who has lost a baby due to APS. A family member died of APS related condition and so she was tested -first test...

Come across someone on an unrelated forum who has lost a baby due to APS. A fami...

Lucky67

•11 years ago

2 Replies

antiphospholipid syndrome attacks lungs need help

I want to ask for your help, It's about my sister whose condition progressively worse. Doctors suspect on pulmonary fibroma as the result of the...

I want to ask for your help, It's about my sister whose condition progressively ...

helpmysister

•11 years ago

25 Replies

Seizures, just got out of hospital after being admitted from home with maybe two seizures.

My diagnosis is a funny one, rheumy says vasculitis, lupus and APS but neurologist says vasculopathy; the treatment is the same. The hospital have told me I...

My diagnosis is a funny one, rheumy says vasculitis, lupus and APS but neurologi...

annie330

•11 years ago

5 Replies

Is any body has headches b/c of hughes disease or lupus, have a stroke in Feb 2007. My inr regular is 3.1 -3.4. Thks.

Have headaches every day my GP and blood spec and nero spec, have no idea of cause.

Have headaches every day my GP and blood spec and nero spec, have no idea of cau...

msperling

•11 years ago

9 Replies

Info of the Care Data scheme. Important as our medical information will be passed on. It was made law in April 2013 You can opt out.

Go to medconfidential.org you can print off the opt out form. Also take a look at NHS England sets out the next steps of public awareness about care.data....

Go to medconfidential.org you can print off the opt out form. Also take a lo...

bernieembleton

•11 years ago

3 Replies

London support group meeting Wednesday 30th October 2013

Ann Sumra runs the London support group and has restarted it after a short break. This time it will be on a more formal basis and will be supported by Richard...

Ann Sumra runs the London support group and has restarted it after a short break...

Hidden

•11 years ago

6 Replies

New to Hughes, but not really.

Hi there...I have been battling my symptoms since I was 20. I have been diagnosed with MS several times, but my MRI's always come back normal. Next was chronic...

Hi there...I have been battling my symptoms since I was 20. I have been diagnose...

VBAustralia

•11 years ago

14 Replies

Numbness down the right side of my face

Noah2010

•11 years ago

19 Replies

Strange Blood Test?

Hello Everyone I had to go to hospital this morning for some blood tests. It took nearly 40 minutes for them to take 4 small tubes of blood. For some reason...

Hello Everyone I had to go to hospital this morning for some blood tests. It to...

InSpain

•11 years ago

24 Replies

Blood in white of eye

Hi everyone I was just wondering has anyone else had what I could only call bleeding into the white of the eye its not bloodshot its more like a pooling of...

Hi everyone I was just wondering has anyone else had what I could only call blee...

Tanbelan

•11 years ago

9 Replies

clexane

St T's are suggesting a new drug plan to my specialist up here in Staffordshire. I will see my local consultant tomorrow. They are suggesting an INR of 3-4...

St T's are suggesting a new drug plan to my specialist up here in Staffordshire....

stillwaiting

•11 years ago

4 Replies

B12 deficiency

hello Whilst I am awaiting the blood test result regarding pernicious anaemia my dr has given me b12 tablets though she says it is unlikely to be diet related...

hello Whilst I am awaiting the blood test result regarding pernicious anaemia my...

stillwaiting

•11 years ago

4 Replies

Other than medication has anyone found anything that helps with memory and tiredness? Mine has severely got worse in last 6 months...

I've only been on 1 baby aspirin a day for the last year. I sleep about 8-10 hours a night. And always had memory issues but seems to have gotten significantly...

I've only been on 1 baby aspirin a day for the last year. I sleep about 8-10 hou...

butlertammy

•11 years ago

11 Replies

Is it safe to stop aspirin before birth in week 35 with positive APS antibodies?

Hello. I´m very worried to stop taking aspirin 75 mg in week 36 of pregnancy before birth and continue only on low molecular heparin. I do read different...

Hello. I´m very worried to stop taking aspirin 75 mg in week 36 of pregnancy bef...

cuculik

•11 years ago

24 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for October 2013

hello, i am new to this and don't know much about HS. My father had HS and died from multiple strokes 3 yrs ago, i tested positive for a

Best book to buy on APS?

IBS and Fatigue (my theory that works)

Anyone with APS and PA1-gene mutation?

APS and White Matter in Brain & Dizzines

lots of questions

B12

Is anyone from this group going to the Meeting for APS patients in the South West in Bath?

Does anyone have/ had eye problems linked to Hughes!

cyclophosphamide

Is Cyclophosphamid only solution

Advice re bruising to thigh

If you were booking a private appointment, which one of these consultants would you choose? Prof Hughes, Prof Khamashta or Prof D'Cruz?

I have been tested positive for APS after recurrent miscarriages and given a treatment plan if I get pregnant again.

I have been tested twice for APS with 2 positive results as a result of recurrent miscarriage. Dr said it will only affect me during preg??

APS and bones

Anyone have a negative APS test at start of pregnancy and gone on to test positive mid/later pregnancy?

antiphospholipid syndrome attacks lungs need help

Seizures, just got out of hospital after being admitted from home with maybe two seizures.

Is any body has headches b/c of hughes disease or lupus, have a stroke in Feb 2007. My inr regular is 3.1 -3.4. Thks.

Info of the Care Data scheme. Important as our medical information will be passed on. It was made law in April 2013 You can opt out.

London support group meeting Wednesday 30th October 2013

New to Hughes, but not really.

Numbness down the right side of my face

Strange Blood Test?

Blood in white of eye

clexane

B12 deficiency

Other than medication has anyone found anything that helps with memory and tiredness? Mine has severely got worse in last 6 months...

Is it safe to stop aspirin before birth in week 35 with positive APS antibodies?

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