Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,354 members • 10,542 posts

All posts for November 2013

Here we go again...

Hi everyone, I'm pregnant again! 7 weeks, just had a scan and it's just one this time thank goodness. Heart beat seen and all looking as it should. Really...

Hi everyone, I'm pregnant again! 7 weeks, just had a scan and it's just one this...

Hopingforababy

•10 years ago

16 Replies

I have noticed that some of you take high doses of vitamin D, is it because of symptoms like SAD?

I have been diagnosed with APS, but when I get Drs. that disagree with this diagnosis, they put down hypersomnlence, sometimes I do get very sleepy, sometimes...

I have been diagnosed with APS, but when I get Drs. that disagree with this diag...

donnabrain

•10 years ago

4 Replies

Just wanted to thank Absnotfab for mentioning the Gluten Summit.

I am coeliac and the lectures were so informative and enlightening. I knew eating Gluten for me was a complete No no, but I didn't realize just how many...

I am coeliac and the lectures were so informative and enlightening. I knew eatin...

Everdean

•10 years ago

4 Replies

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Is Antiphospholipid syndrome an official rare disease or not?

Good morning to everyone!! I would like to ask a question to the organisers of the foundation. Is Antiphospholipid syndrome considered as an official rare...

Good morning to everyone!! I would like to ask a question to the organisers of t...

swirl

•10 years ago

5 Replies

Hi there I have Hughes syndrome and have been diagnosed with an umbilical hernia, which itself is quite a straight forward procedure however

Hi there I have Hughes syndrome and have been diagnosed with an umbilical hernia, which itself is quite a straight forward procedure however I have a blood...

Hi there I have Hughes syndrome and have been diagnosed with an umbilical hernia...

Michaeljenkinson

•10 years ago

3 Replies

Hi all, I am new to this site :)

Hi, I was diagnosed with seronegative cerebral APS just over a year ago and would love to chat with anyone of a similar age who also has the condition. I am...

Hi, I was diagnosed with seronegative cerebral APS just over a year ago and woul...

Cejo

•10 years ago

8 Replies

Feeling low after a long night in A&E

I posted about a fortnight ago as my inr had shot up then stabilised then shot again following 12 days of antibiotics. Had a inr on the 20th 3.5 (just over my...

I posted about a fortnight ago as my inr had shot up then stabilised then shot a...

Zezes-nan

•10 years ago

7 Replies

How the other half lives.

I have been ill for as long as I can remember - I can remember at school aged 6 or so, being in awe of the other kids because they had so much energy :) But I...

I have been ill for as long as I can remember - I can remember at school aged 6 ...

stillwaiting

•10 years ago

5 Replies

Selling crafts to raise funds for Hughes Syndrome Foundation

Hi everyone.. Some of you will have seen that i've been making some little cheap xmas related items to help fund raise for HSF. Well I have created a page on...

Hi everyone.. Some of you will have seen that i've been making some little cheap...

kateb81

•10 years ago

1 Reply

Pregnant with aps

Found out I am pregnant 4 days ago and cant get hold of my consultant to let her know so I can be started on heparin. Dont know what to do now :( any ideas ???

Found out I am pregnant 4 days ago and cant get hold of my consultant to let her...

sarahlou1801

•10 years ago

12 Replies

I am taking warfarin and my INR today went 3.7. What can I do to get it back down between 2.0-3.0?

Also while at 3.7 I became lighted headed 3 times that day & had to lie down. How do you prevent this light headiness?

Also while at 3.7 I became lighted headed 3 times that day & had to lie down. H...

Hidden

•10 years ago

5 Replies

Meeting in the Staffordshire / Derbyshire area :)

Hi I'm the area leader for this area, so I'm arranging a meeting in Staffordshire / Derbyshire, in the middle of December, I shall post time & date when I am...

Hi I'm the area leader for this area, so I'm arranging a meeting in Staffordshir...

Suzypawz

•10 years ago

9 Replies

Meeting at C.A.B.

I've been to C.A.B. today as they are helping me fight an appeal against D.L.A. Stopping my money....don't rate much to the success of it, but hoping that...

I've been to C.A.B. today as they are helping me fight an appeal against D.L.A. ...

Suzypawz

•10 years ago

6 Replies

Memory loss and a feeling of "can't cope" with work

For the past 2 years every time I've been to see the specialist or my GP, I've mentioned that I keep forgetting things I've always remembered. They just shrug...

For the past 2 years every time I've been to see the specialist or my GP, I've m...

Nat1969

•10 years ago

22 Replies

Help with fund raising

Hello fellow HSF friends.. As some of you know my husband is doing a sponsored bike ride for HSF next July however sponsorship has dried up atm (prob due to...

Hello fellow HSF friends.. As some of you know my husband is doing a sponsored ...

kateb81

•10 years ago

10 Replies

i had PE in feb this year and I am now diagnosed with COPD past couple of days I have had really bad spasams in my chest and top of my back

its very painfull and scarey is it normal thanks

thomas70

•10 years ago

9 Replies

Do any of you have any experience with vision problems caused by Plaquenil toxicity? Or any experience quitting Plaquenil because of it?

ASigmon

•10 years ago

4 Replies

Very different form of migraine?

Hello I have just discovered this forum and am hoping for the benefit of others' experience. I have has APS for 12 years, which was discovered after a DVT in...

Hello I have just discovered this forum and am hoping for the benefit of others'...

katrinafox02

•10 years ago

20 Replies

PETITION

Hi everyone, could members please sign the St Thomas's Petition under "Pinned Posts (to the right here). It would be nice to reach a figure of 100 signing the...

Hi everyone, could members please sign the St Thomas's Petition under "Pinned Po...

bernieembleton

•10 years ago

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Lupus anticoagulant

Hi all, I've just been to see my Rheumatologist, I asked him how he came to the conclusion that I have Aps. He said I was seropositive and because of my very...

Hi all, I've just been to see my Rheumatologist, I asked him how he came to the ...

Elfie1

•10 years ago

2 Replies

I have large painful rashes on my legs which krill oil has cleared up. It contains phospholipids though. Is it still safe to take?

It is the only thing that has worked for the rashes, which includes my scalp. My toes and foot are usually numb but the krill seems to have helped that too. I...

It is the only thing that has worked for the rashes, which includes my scalp. My...

Kristine1970

•10 years ago

3 Replies

Constant blood tests but never any answers....

I had a DVT & PE 5 years ago. A couple of months after recovering I was diagnosed with type 2 diabetes but I have never needed medication for it - my regular...

I had a DVT & PE 5 years ago. A couple of months after recovering I was diagnose...

RRL31

•10 years ago

3 Replies

Hip replacement update

Here I am on day 10 of a projected 42 day recovery. I was in the hospital for 6 days -- longer then anticipated because my blood pressure kept crashing...

Here I am on day 10 of a projected 42 day recovery. I was in the hospital for...

GinaD

•10 years ago

11 Replies

I'm curious as to what other people's Anticardiolipin and Beta2glycoprotein numbers are...

I know that they can change all the time. I am still trying to really learn about APS and good information has been hard for me to come by. My blood was just...

I know that they can change all the time. I am still trying to really learn abo...

GraceEllie2012

•10 years ago

5 Replies

Medical records

Does anyone know if you can have things removed from your medical records?

panda60

•10 years ago

6 Replies

Next step along the journey...

Hi again everyone, today I went to St Mary's hospital to discuss treatment for my Lupus Anticoagulant in future pregnancies. I learnt a great deal. Lupus...

Hi again everyone, today I went to St Mary's hospital to discuss treatment for m...

Hopingforababy

•10 years ago

3 Replies

Maybe a daft question but...do we get "flare ups" with APS?

Also I find it difficult to identify which symptom is due to which auto immune problem I have. I have lupus symptoms, APS and Pernicious Anaemia. Last night I...

Also I find it difficult to identify which symptom is due to which auto immune p...

stillwaiting

•10 years ago

13 Replies

Hi im new here and have recently had a diagnosis of Hughes syndrome and sjogren's syndrome.

I actually thought I had lupus as I have many signs of it and have had 2 positive blood tests for it although I haven't actually had a diagnosis for that which...

I actually thought I had lupus as I have many signs of it and have had 2 positiv...

white1432012

•10 years ago

9 Replies

Inr

Hi, I'm taking 4mg of wafarin and my inr is 1.4. Is that good

Nenaperu1

•10 years ago

7 Replies

No DVT but clots in urine

I went to get a scan per my doctor's recommendation, and thankfully it was negative. I have developed a new problem though, with clots in my urine. I had...

I went to get a scan per my doctor's recommendation, and thankfully it was negat...

momtomany

•10 years ago

3 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for November 2013

Here we go again...

I have noticed that some of you take high doses of vitamin D, is it because of symptoms like SAD?

Just wanted to thank Absnotfab for mentioning the Gluten Summit.

Is Antiphospholipid syndrome an official rare disease or not?

Hi there I have Hughes syndrome and have been diagnosed with an umbilical hernia, which itself is quite a straight forward procedure however

Hi all, I am new to this site :)

Feeling low after a long night in A&E

How the other half lives.

Selling crafts to raise funds for Hughes Syndrome Foundation

Pregnant with aps

I am taking warfarin and my INR today went 3.7. What can I do to get it back down between 2.0-3.0?

Meeting in the Staffordshire / Derbyshire area :)

Meeting at C.A.B.

Memory loss and a feeling of "can't cope" with work

Help with fund raising

i had PE in feb this year and I am now diagnosed with COPD past couple of days I have had really bad spasams in my chest and top of my back

Do any of you have any experience with vision problems caused by Plaquenil toxicity? Or any experience quitting Plaquenil because of it?

Very different form of migraine?

PETITION

Lupus anticoagulant

I have large painful rashes on my legs which krill oil has cleared up. It contains phospholipids though. Is it still safe to take?

Constant blood tests but never any answers....

Hip replacement update

I'm curious as to what other people's Anticardiolipin and Beta2glycoprotein numbers are...

Medical records

Next step along the journey...

Maybe a daft question but...do we get "flare ups" with APS?

Hi im new here and have recently had a diagnosis of Hughes syndrome and sjogren's syndrome.

Inr

No DVT but clots in urine

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