Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,356 members • 10,544 posts

All posts for May 2012

Problems with chronic kidney disease?

Hi Everyone, It's really great to have found this site, even though I'm across the ocean from most of you. My question is this: Last fall I had a kidney...

Hi Everyone, It's really great to have found this site, even though I'm acros...

Leigha

•12 years ago

13 Replies

Should I get my daughter tested for Hughes?

I have Lupus SLE and Hughes - my daughter (18) is a mini me at her age, migraines, constant headaches etc - she has had an APTT clotting test and came out at...

I have Lupus SLE and Hughes - my daughter (18) is a mini me at her age, migraine...

MaryHolder

•12 years ago

5 Replies

Really feeling Poorly, losing the will.....can anybody help???

I had a really bad turn last night could hardly breath the buring sensation down my face behind my eye and into my arms was very worrying, I did want to call...

I had a really bad turn last night could hardly breath the buring sensation down...

traceylou

•12 years ago

7 Replies

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

Been feeling really low and not sure why (Loooong blog! sorry)

Hi all I've been away for a while - all sorts of things have been happening and I needed to concentrate on them for a bit! Sorry. Also I am sorry to...

Hi all I've been away for a while - all sorts of things have been happening a...

Hidden

•12 years ago

22 Replies

How often do you get tested for your antibody levels?

Do most clinics do these tests just for the diagnosis and then don't repeat again? The reason I ask is I queried whether my 'episodes' of bad health could be...

Do most clinics do these tests just for the diagnosis and then don't repeat agai...

travelnut

•12 years ago

8 Replies

Can anyone help with this please?

Does anyone have a name and hospital of a doctor in the midlands who is well-versed in Hughes? Or is St Thomas' the best option to try for a knowledgeable...

Does anyone have a name and hospital of a doctor in the midlands who is well-ver...

Squeezer

•12 years ago

7 Replies

consultant appointment

I finally got to see a consultant today.... Dr Chui He had met me before as he had trained under my old consultant who had retired. He made me feel at ease...

I finally got to see a consultant today.... Dr Chui He had met me before as he ...

sharonap

•12 years ago

7 Replies

something to make you smile inbetween Hughes moments!!

Oh here is a pic' of me at the Jovi gig last Sat' with a little Hughes set up I left at the back of the ampitheatre, where people could take info' away with...

Oh here is a pic' of me at the Jovi gig last Sat' with a little Hughes set up I ...

Suzypawz

•12 years ago

9 Replies

I have aps but think i have lupus

Hya basicly i was diagnosed with aps three yr ago but recently i keep gettin spot like bruses out of no where n sme times get big bruises n ive not even hury...

Hya basicly i was diagnosed with aps three yr ago but recently i keep gettin spo...

kezebabe

•12 years ago

11 Replies

My 'Funny Turns'

Some of you will already know that I have been getting a lot of 'funny turns' initially since early 2010, with a recurrance of 'classical' migraines' treated...

Some of you will already know that I have been getting a lot of 'funny turns' in...

Manofmendip

•12 years ago

33 Replies

Canadian doctors specializing in APS

Just now got an email from Dr. Hughes! He suggested Dr. John Esdaile working in both Vancouver and Calgary as a resource. Dr. Esdaile has worked alongside Dr....

Just now got an email from Dr. Hughes! He suggested Dr. John Esdaile working in ...

siveinvan

•12 years ago

29 Replies

Bio identical HRT and blood clots

I have bee on bio identical, compounded HRT for @ 3 years. I planned to face menopause ith out hormone help. But when my a fib got worse, I decided to give...

I have bee on bio identical, compounded HRT for @ 3 years. I planned to face me...

GinaD

•12 years ago

10 Replies

IBS and flare up's. Are they linked?

Hi everyone. Just wondered if anyone else on here has IBS and if they notice it flaring up at the same time as an 'aps' flare or vice versa? Since loosing my...

Hi everyone. Just wondered if anyone else on here has IBS and if they notice it...

kateb81

•12 years ago

5 Replies

Scottish Sunday Mail article

For those of you not on Facebook here is the link to the feature which appeared yesterday:...

For those of you not on Facebook here is the link to the feature which appeared ...

Hidden

•12 years ago

3 Replies

NEW INTERVIEW on Hughes Syndrome with Dr Le Fanu from The Daily Telegraph

http://www.telegraph.co.uk/health/9292522/Doctors-Diary-Is-Hughes-syndrome-the-new-syphilis.html Mary F

http://www.telegraph.co.uk/health/9292522/Doctors-Diary-Is-Hughes-syndrome-the-n...

MaryF

Administrator•12 years ago

6 Replies

Help - such pain - has anyone else experienced this.

As I am still a relatively new patient I am hoping that someone out there may have experienced what I am feeling - could have run a marathon on Friday then...

As I am still a relatively new patient I am hoping that someone out there may ha...

RebeccaP

•12 years ago

10 Replies

current articles

http://www.telegraph.co.uk/health/healthnews/9293163/Enoy-the-sun-and-eat-fish-to-reduce-stroke-risk.html...

http://www.telegraph.co.uk/health/healthnews/9293163/Enoy-the-sun-and-eat-fish-t...

MaryF

Administrator•12 years ago

2 Replies

consultant appointment

Just sat down and wrote out my medical history for consultant appointment on tuesday.. and my conclusion is... my life sucks(thats the polite word).. 6...

Just sat down and wrote out my medical history for consultant appointment on tue...

sharonap

•12 years ago

9 Replies

New poster!

Hi there seems to be some info' updated with Hughes....which is expected, so here is a new leaflet for anyone that would like to put some more up for us :)...

Hi there seems to be some info' updated with Hughes....which is expected, so her...

Suzypawz

•12 years ago

7 Replies

Does anybody know what is spinal degenartive disease is?

I have a really painful lumar, tests reveal gaps at the bottom of my spine, really confused, urgh spitting teeth Traceylouxx

I have a really painful lumar, tests reveal gaps at the bottom of my spine, real...

traceylou

•12 years ago

3 Replies

BBC Breakfast autoimmune research

This may be of general interest a few articles 1. BBC Breakfast clip on autoimmune disease and pregnancy...

This may be of general interest a few articles 1. BBC Breakfa...

MaryF

Administrator•12 years ago

7 Replies

Advice for a newby?

Hi everyone. I've just been diagnosed with APS as a result of investigations for recurrent miscarriage. I've been given very little info about the condition,...

Hi everyone. I've just been diagnosed with APS as a result of investigations for...

Northy81

•12 years ago

6 Replies

Is there a link between APS & having a baby born with a heart condition?

My daughter was born with tetralogy of fallot ( narrowing of the pulmonary artery). I had her after 5 miscarriages. After she was born & four miscarriages...

My daughter was born with tetralogy of fallot ( narrowing of the pulmonary arter...

Nccarolina

•12 years ago

13 Replies

occupational health assessment

I am currently looking into leaving work as a teaching assistant possibly retiring on health grounds. I have been told I will have to go for an occpational...

I am currently looking into leaving work as a teaching assistant possibly retiri...

janekins

•12 years ago

4 Replies

Does anyone know if the blood tests for Hughes have to be done within a certain time of the blood having been taken? Thanks.

Squeezer

•12 years ago

7 Replies

Is there any connection with having Dermatitus and Antiphospholipid syndrome?

jean48

•12 years ago

2 Replies

Current articles:

http://www.telegraph.co.uk/health/healthnews/9285037/More-should-receive-clot-busting-stroke-drug-research.html http://soc.li/eFJ2vPT Mary F

http://www.telegraph.co.uk/health/healthnews/9285037/More-should-receive-clot-bu...

MaryF

Administrator•12 years ago

2 Replies

Do you think our children are likely to have APS? Is it known to be genetic?

As a mom of a 15 year old girl, just wondering...thanks all.

siveinvan

•12 years ago

10 Replies

salivary gland biopsy on lip

Has anyone had one of these? I did have an unsuccesful biopsy last year which was supposedly done via scan machine, but yesterday had a biopsy where the...

Has anyone had one of these? I did have an unsuccesful biopsy last year which w...

daisy11

•12 years ago

4 Replies

Heat intolerance?

Does anyone suffer from heat intolerance with hughes syndrome? I haven't actually been diagnosed with this but had antiphospholipid antibodies a couple years...

Does anyone suffer from heat intolerance with hughes syndrome? I haven't actual...

babyblooeyes

•12 years ago

10 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for May 2012

Problems with chronic kidney disease?

Should I get my daughter tested for Hughes?

Really feeling Poorly, losing the will.....can anybody help???

Been feeling really low and not sure why (Loooong blog! sorry)

How often do you get tested for your antibody levels?

Can anyone help with this please?

consultant appointment

something to make you smile inbetween Hughes moments!!

I have aps but think i have lupus

My 'Funny Turns'

Canadian doctors specializing in APS

Bio identical HRT and blood clots

IBS and flare up's. Are they linked?

Scottish Sunday Mail article

NEW INTERVIEW on Hughes Syndrome with Dr Le Fanu from The Daily Telegraph

Help - such pain - has anyone else experienced this.

current articles

consultant appointment

New poster!

Does anybody know what is spinal degenartive disease is?

BBC Breakfast autoimmune research

Advice for a newby?

Is there a link between APS & having a baby born with a heart condition?

occupational health assessment

Does anyone know if the blood tests for Hughes have to be done within a certain time of the blood having been taken? Thanks.

Is there any connection with having Dermatitus and Antiphospholipid syndrome?

Current articles:

Do you think our children are likely to have APS? Is it known to be genetic?

salivary gland biopsy on lip

Heat intolerance?

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