Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,368 members • 10,563 posts

All posts for August 2012

How long does it take you to get moving in the morning when you wake up?

My doc asked me this which I had never really put any thought to it before, I guess it always was just the way it is.... I realized though that it usually...

My doc asked me this which I had never really put any thought to it before, I gu...

Hidden

•12 years ago

1 Reply

APS and strokes

Just wondering how many of us have had it confirmed that they have suffered from small strokes and a stroke? Feedback would be great..many thanks I wish to...

Just wondering how many of us have had it confirmed that they have suffered from...

traceylou

•12 years ago

25 Replies

We do NOT have APS. We have AUTOIMMUNITY!

I've been seeing a number of posts lately regarding unfortunate experiences with doctors, poor treatment protocols and severe symptomaic APS sufferers. Most...

I've been seeing a number of posts lately regarding unfortunate experiences with...

TheKid

•12 years ago

17 Replies

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St Thomas's referral

I'm off up to London tomorrow for my referral with Prof Hunt. Its the first time I've been excited about going to a hospital!!! Just hope she can give me some...

I'm off up to London tomorrow for my referral with Prof Hunt. Its the first time...

janekins

•12 years ago

4 Replies

Sooo........ Did you know the only problem APS/Hughes causes is clots?!?!?

Yep.... That is precisely what I was told by a new doc I saw today when we were discussing lupus and APS... Imagine that! I told him he was very much...

Yep.... That is precisely what I was told by a new doc I saw today when we were ...

Hidden

•12 years ago

18 Replies

Suffering with a.p.s. and crying with exhaustion.

i have a.p.s. and several other related health problems, but briefly can any one please tell me if they cry with exhaustion, and am i lacking something in my...

i have a.p.s. and several other related health problems, but briefly can any one...

top_hole

•12 years ago

17 Replies

Livedo Rash?

How many of us has this rash? I have it extensively on my arms and face and trunk and it flairs on my legs.....

How many of us has this rash? I have it extensively on my arms and face and trun...

traceylou

•12 years ago

12 Replies

Silly me

Hi im new to all this I only got told 3 weeks ago I have ApS, so bare with me please, and before my diagnosis I would have put it down to my clumsy nature and...

Hi im new to all this I only got told 3 weeks ago I have ApS, so bare with me pl...

clumsy3

•12 years ago

10 Replies

How does exercise affect your hip pain?

It seems that most of us with APS have hip pain problems when our INR is not right. When it is right and you exercise, do you have any pain? I'm trying to...

It seems that most of us with APS have hip pain problems when our INR is not rig...

iwantsimple

•12 years ago

8 Replies

it's me

Jet here -sorry that i havn't to active--- lot's on my plate- many uncontroled things in my life, 1 st - surgrey went OK but not what i needed for the out...

Jet here -sorry that i havn't to active--- lot's on my plate- many uncontroled ...

jetjetjet

•12 years ago

7 Replies

Interesting article:

http://www.independent.co.uk/news/uk/home-news/disabled-woman-took-on-welfare-system--and-won-8037165.html Mary F x

http://www.independent.co.uk/news/uk/home-news/disabled-woman-took-on-welfare-sy...

MaryF

Administrator•12 years ago

2 Replies

Is it APS or MS or both?

HELP! I wander if any of you have had a similar experience. I was diagnosed with MS a year ago following an episode of tingling/numbness in left hand/arm.I...

HELP! I wander if any of you have had a similar experience. I was diagnosed wit...

mitzygaynor

•12 years ago

21 Replies

struggling with my memory

Really struggling with my memory again. I have put a notebook on my kitchen table with what the day is in capital letters (thought Tuesday was Wednesday last...

Really struggling with my memory again. I have put a notebook on my kitchen tab...

panda60

•12 years ago

4 Replies

can I come off anti-epileptic medication have been diagnosed with Hughes syndrome and I have not had a seizure since been on warfarin ?

muzza

•12 years ago

3 Replies

Fragmin

Hi all I've been put on Fragmin today it doesnt say when to take it can you do anytime. Thanks xx

Hi all I've been put on Fragmin today it doesnt say when to take it can you do a...

Moonbug

•12 years ago

3 Replies

Update on Rivaroxiban

Some of you may know that following a large DVT in my thigh last year I was put onto Warfarin, but my GP could not stabilise my INR and the clot extended. An...

Some of you may know that following a large DVT in my thigh last year I was put ...

Glitterwitch

•12 years ago

6 Replies

Pain meds

When taking medication for pain, are pill forms of meds less effective for you, and have to go to hosplital for IV pain meds to get reliief... and what pain...

When taking medication for pain, are pill forms of meds less effective for you, ...

Skyllark

•12 years ago

3 Replies

Is it okay to alternate 2.5 mg and 3.0 mg of Warfarin every other day?

I've read that we need to be very careful about decreasing dosages, but my doc wants me to alternate day to day. Does anyone else do this? I seem to need 2.75...

I've read that we need to be very careful about decreasing dosages, but my doc w...

iwantsimple

•12 years ago

14 Replies

ESA

Just had phone call from ATOS to arrange medical, the woman says you carnt attend on wednesdays (which I had put on questionaire due to having INR done ) Oh...

Just had phone call from ATOS to arrange medical, the woman says you carnt atten...

sharonap

•12 years ago

12 Replies

Have you participated in the Exercise & APS survey?

https://survey.kent.ac.uk/exerciseandaps Karen is an APS patient as well as a researcher at Univeristy of Kent (she has a PhD in Physiotherapy and is a...

https://survey.kent.ac.uk/exerciseandaps Karen is an APS patient as well as ...

Hidden

•12 years ago

15 Replies

Making a change to testing after 1 miscarriage rather than having to wait for 3 losses before we are taking seriously!

Hi there guys, in the UK we currently have to go through 3 losses before we are tested for things like Hughes, it often takes us a fight before anyone can...

Hi there guys, in the UK we currently have to go through 3 losses before we are ...

Leelaked77

•12 years ago

9 Replies

Preparation for appointment at St Thomas's

Hi all I have just received my appointment with Prof Hunt's team and wondered if i could have some tips on how best to prepare in terms of information they...

Hi all I have just received my appointment with Prof Hunt's team and wondered i...

Hidden

•12 years ago

8 Replies

Bleed into knee - anyone else had this??

Further to the question I asked on the 25/07/12 regarding knee pain. Know what it was now, I had a bleed into my left knee and the joint locked. Just been...

Further to the question I asked on the 25/07/12 regarding knee pain. Know what ...

MaryH

•12 years ago

6 Replies

Are there any restrictions or concerns with exercising with APS?

I finally received a diagnosis 2 months ago, and now that I'm on Coumadin, I feel so much better! For the past 2 years, though, I have done next to nothing...

I finally received a diagnosis 2 months ago, and now that I'm on Coumadin, I fee...

iwantsimple

•12 years ago

11 Replies

Struggling to remember appointments

Hi my memory is getting worse to the point its effecting my work and getting to appointments on time or right day, seeing black dots floating, temper rages...

Hi my memory is getting worse to the point its effecting my work and getting to ...

KarenOR

•12 years ago

12 Replies

Hi guys could someone tell me the main centre hospitals that deal with APS? I'd like to pass the info to my gp whom I will be seeing soon.

TreyBon64

•12 years ago

7 Replies

Buzzing headaches that occur in waves

Has anyone else had headaches that hit suddenly, intensely, and literally stop you in your tracks? It's the way it comes on that frightens me. It could happen...

Has anyone else had headaches that hit suddenly, intensely, and literally stop y...

CanaryDiamond10

•12 years ago

6 Replies

Please take the time to do the Prescription Charges survey - for UK only members, sorry!

The Hughes Syndrome Foundation is a member of the Prescription Charges Coalition which is an alliance of over 20 charities and other organisations campaigning...

The Hughes Syndrome Foundation is a member of the Prescription Charges Coalition...

Hidden

•12 years ago

9 Replies

Tia attacks

Hi all was just wondering if you was getting lots of Tia attacks would it make a d diner positive. thanks xx

Hi all was just wondering if you was getting lots of Tia attacks would it make a...

Moonbug

•12 years ago

2 Replies

Two APS Patients Being Good Friends? The world isn't ready!

The world isn't ready for me and Jet to be buddies but I have to tell you its really nice to have someone right here and so close by that can relate and...

The world isn't ready for me and Jet to be buddies but I have to tell you its re...

Hidden

•12 years ago

14 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for August 2012

How long does it take you to get moving in the morning when you wake up?

APS and strokes

We do NOT have APS. We have AUTOIMMUNITY!

St Thomas's referral

Sooo........ Did you know the only problem APS/Hughes causes is clots?!?!?

Suffering with a.p.s. and crying with exhaustion.

Livedo Rash?

Silly me

How does exercise affect your hip pain?

it's me

Interesting article:

Is it APS or MS or both?

struggling with my memory

can I come off anti-epileptic medication have been diagnosed with Hughes syndrome and I have not had a seizure since been on warfarin ?

Fragmin

Update on Rivaroxiban

Pain meds

Is it okay to alternate 2.5 mg and 3.0 mg of Warfarin every other day?

ESA

Have you participated in the Exercise & APS survey?

Making a change to testing after 1 miscarriage rather than having to wait for 3 losses before we are taking seriously!

Preparation for appointment at St Thomas's

Bleed into knee - anyone else had this??

Are there any restrictions or concerns with exercising with APS?

Struggling to remember appointments

Hi guys could someone tell me the main centre hospitals that deal with APS? I'd like to pass the info to my gp whom I will be seeing soon.

Buzzing headaches that occur in waves

Please take the time to do the Prescription Charges survey - for UK only members, sorry!

Tia attacks

Two APS Patients Being Good Friends? The world isn't ready!

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