Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,397 members • 10,602 posts

All posts for July 2012

Does anyone wake up feeling like they are suffocating? Some mornings, I find myself struggling to breathe while I'm asleep,

dreaming that I'm not breathing right and waking up off and on to breathe better again, but when I get up and move around, after a while, I feel better and...

dreaming that I'm not breathing right and waking up off and on to breathe better...

iwantsimple

•12 years ago

28 Replies

A good day -- actually a good week/ month

Sine I raised my INR I continue to grow stronger and more pain free each week. I know it won't last, but I'm sure enjoying it while it's here. Today I even...

Sine I raised my INR I continue to grow stronger and more pain free each week. ...

GinaD

•12 years ago

5 Replies

HEPARIN

i AM ON HEPARIN FOR INR BELOW 3. OF LATE BEEN GIVING IT EVERY DAY AND I SEEM TO GET BRUISES ON TUMMY - DOES ANYONE ELSE HAVE THIS. YET WHEN IN HOSPITAL...

i AM ON HEPARIN FOR INR BELOW 3. OF LATE BEEN GIVING IT EVERY DAY AND I SEEM TO...

daisy11

•12 years ago

10 Replies

Want to take advantage of all our features? Just log in!

How many off us have aps as well as another auto immune illness?M

My health story, glandular fever 14 year old which kept reacurring, some misscarrages but two wonderful children, hystorrectomy at 27 took my womb left my...

My health story, glandular fever 14 year old which kept reacurring, some misscar...

miley

•12 years ago

10 Replies

Any suggestions for how to prepare for first appointment with haematologist?

Hi, I've been lurking for a week, and so glad I've found this site. I had one test after my first late miscarriage and they treated me as if I have APS,...

Hi, I've been lurking for a week, and so glad I've found this site. I had on...

aliceblue

•12 years ago

5 Replies

Sudden sensorineural hearing loss

Has anyone else suffered this? I woke up recently with my hearing, which is affected anyway, feeling as if I was 'underwater'. Can hear but my hearing is much...

Has anyone else suffered this? I woke up recently with my hearing, which is affe...

aussiesue

•12 years ago

9 Replies

saw my GP

Saw my doctor today about this horrendous brain fog and memory problems. I have had some blood tests done and am to go back and see him next week to get the...

Saw my doctor today about this horrendous brain fog and memory problems. I have...

panda60

•12 years ago

3 Replies

When do you tell your job you have aps?

I started a job 4 months ago for a team of eye doctors. They have no idea that I have aps. I am scared that something might happen to me at work and they...

I started a job 4 months ago for a team of eye doctors. They have no idea that ...

KellyO

•12 years ago

9 Replies

plaquenil info please

I have now received my bottle of plaquenil liquid as I'm hopeless at taking tablets!! Will be starting it tomorrow morning but had a miniscule taste just to...

I have now received my bottle of plaquenil liquid as I'm hopeless at taking tabl...

janekins

•12 years ago

10 Replies

Another update

Well what can i say i am now on riveroxaban ( not sure i spelt that right ) which was a blessing in disguise as the enxoparin was upsetting my liver and was...

Well what can i say i am now on riveroxaban ( not sure i spelt that right ) whic...

Beckyl1

•12 years ago

5 Replies

This might help with hip pain?

I figured out myself that my 18 month down the rabbit hole debilitating hip pain was partly caused by Hughes, and not just the osteoarthritis bone spur .I...

I figured out myself that my 18 month down the rabbit hole debilitating hip pai...

GinaD

•12 years ago

9 Replies

D dimer

Hi all I have a question about the d dimer well a few years ago I had pain in my leg and went to hospital they did a d dimer which was positive they then gave...

Hi all I have a question about the d dimer well a few years ago I had pain in my...

Moonbug

•12 years ago

5 Replies

THank you to all that answered my question, guess I should have put on there as well....are all of you on blood thinners for life as well?

blood

•12 years ago

18 Replies

Worried Mum and new to site.

My daughter had baby by c section 8 weeks early and with IUGR and low amniotic fluid. (She had a previous ectopic pregnancy about 12 years ago) 4 days later...

My daughter had baby by c section 8 weeks early and with IUGR and low amniotic f...

JennyD

•12 years ago

22 Replies

Hi ! i,m new here from Pennsylvania in the USA.

First after reading so many stories here my heart goes out to everyone with this terrible (autoimmune disease) APS ! I found out i,m not alone with this...

First after reading so many stories here my heart goes out to everyone with this...

dj-92457

•12 years ago

11 Replies

Saw hematologist, eek!, am not sure......

She told me not to worry about my antiphospholipid IgM count of 118 (here in States 20 or below is normal). I have been and am concerned. She kind of brushed...

She told me not to worry about my antiphospholipid IgM count of 118 (here in Sta...

Leigha

•12 years ago

5 Replies

Is there any one out there around the age of 38 who has had this for atleast six years or more?

blood

•12 years ago

28 Replies

Can APS turn into CAPS?

Hello my name is Rhonda. I don't have APS but my son does. He is 22 and has had it since he was 12. I was wondering if APS can turn into CAPS?

Hello my name is Rhonda. I don't have APS but my son does. He is 22 and has had ...

Ronda

•12 years ago

8 Replies

Brain fog has taken over completely!

I have been dreadful the last three weeks - hoped would be better after a week's holiday, but no luck. Going to see the GP on Friday as am experiencing the...

I have been dreadful the last three weeks - hoped would be better after a week's...

panda60

•12 years ago

11 Replies

Taling about brain fog- I feel very distraced when I drive. My husband thinks I'm bound to get in an accident. Anyone feel like this?

jean48

•12 years ago

7 Replies

Facebook page

Hi all, I have just launched a face book page which as well as shows my photography on it............. it also has information & links to Hughes Syndrome /...

Hi all, I have just launched a face book page which as well as shows my photogra...

Suzypawz

•12 years ago

14 Replies

orthostatic tremor. anyone else with this diagnosis?

I have orthostatic tremor, its said to be rare, it is very disabling for me. You can find out more at http://www.orthostatictremor.org/ because its...

I have orthostatic tremor, its said to be rare, it is very disabling for me. Yo...

purple

•12 years ago

11 Replies

flying and scuba have M.S., proteins, dvt and hughs synrome, need to find travel insurance life is for living thats what I intend too do.

any help will be appreciated,I learnt to scuba whilst in my wheelchair which only comes out occasionally had to fight neuro to get a letter to allow me now...

any help will be appreciated,I learnt to scuba whilst in my wheelchair which on...

miley

•12 years ago

8 Replies

Is there anyone from Australia here? And if there is what is your experience of Australian doctors and their knowledge of Hughes Syndrome?

Hidden

•12 years ago

21 Replies

this may be an alternative for Warfarin

My name is Luz and I´m 27 years old, I have Hughes sydrom, three blood cloths two filters I´m on Warafarin now, but I read about this alternative:

My name is Luz and I´m 27 years old, I have Hughes sydrom, three blood cloths tw...

luzinha

•12 years ago

10 Replies

Ovarian cyst and APS - could they be related

Hi there, came with bad news today... For the past few weeks I have been feeling an awkward pain in my belly and the pain has only gotten worst, so I went to a...

Hi there, came with bad news today... For the past few weeks I have been feeling...

BrazilianBade

•12 years ago

15 Replies

Eye clinic

Attended local hospital eye clinic due to black area in vision. The doctor was amazing she knew about aps and sneddons and asked loads of questions and was...

Attended local hospital eye clinic due to black area in vision. The doctor was a...

sharonap

•12 years ago

8 Replies

Signs of blood clot(s)?

Just wondering, for those that have experienced blood clots, did you know it at the time? If so, what were your exact symptoms? Or did you not know it until...

Just wondering, for those that have experienced blood clots, did you know it at ...

Hilariew930

•12 years ago

14 Replies

antiphospholipid syndrome

My mom has been diagnosed with hughes syndrome and was told by her GP that i should get myself tested for it as its hereditary. What are the chances of either...

My mom has been diagnosed with hughes syndrome and was told by her GP that i sho...

steve2012

•12 years ago

10 Replies

Hopefully in the future, all hospitals will have knowledge of Hughes Syndrome

Our drive to build a data base of those individuals and teams with working knowledge of APS will one day perhaps cause less events like this: This is in my...

Our drive to build a data base of those individuals and teams with working knowl...

MaryF

Administrator•12 years ago

10 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for July 2012

Does anyone wake up feeling like they are suffocating? Some mornings, I find myself struggling to breathe while I'm asleep,

A good day -- actually a good week/ month

HEPARIN

How many off us have aps as well as another auto immune illness?M

Any suggestions for how to prepare for first appointment with haematologist?

Sudden sensorineural hearing loss

saw my GP

When do you tell your job you have aps?

plaquenil info please

Another update

This might help with hip pain?

D dimer

THank you to all that answered my question, guess I should have put on there as well....are all of you on blood thinners for life as well?

Worried Mum and new to site.

Hi ! i,m new here from Pennsylvania in the USA.

Saw hematologist, eek!, am not sure......

Is there any one out there around the age of 38 who has had this for atleast six years or more?

Can APS turn into CAPS?

Brain fog has taken over completely!

Taling about brain fog- I feel very distraced when I drive. My husband thinks I'm bound to get in an accident. Anyone feel like this?

Facebook page

orthostatic tremor. anyone else with this diagnosis?

flying and scuba have M.S., proteins, dvt and hughs synrome, need to find travel insurance life is for living thats what I intend too do.

Is there anyone from Australia here? And if there is what is your experience of Australian doctors and their knowledge of Hughes Syndrome?

this may be an alternative for Warfarin

Ovarian cyst and APS - could they be related

Eye clinic

Signs of blood clot(s)?

antiphospholipid syndrome

Hopefully in the future, all hospitals will have knowledge of Hughes Syndrome

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