Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,356 members • 10,544 posts

All posts for September 2013

I have primary APS and I get one cold hand after running, what could cause this??

Hi, I have primary APS - I had a Sagittal sinus thrombosis in 2007, I'm 26 years old. I was diagnosed with APS in Jan, and I take warfarin and beta blockers....

Hi, I have primary APS - I had a Sagittal sinus thrombosis in 2007, I'm 26 years...

Louise_Davies

•11 years ago

2 Replies

hello

anyone know how 2 convince docs I need b steralised....... I got referred 2 gynae but he laughed thru appointment and said no....... im back on waiting list...

anyone know how 2 convince docs I need b steralised....... I got referred 2 gyna...

rach1081985

•11 years ago

4 Replies

Questions - APS

Good Afternoon. I was wondering if anyone could throw some light on what I should or should not do. Over the years I have experienced a number of health...

Good Afternoon. I was wondering if anyone could throw some light on what I shoul...

crista1

•11 years ago

12 Replies

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

Been discharged does anyone know where I can good get information on seronegative as I'm back to square one and face another battle :(

Hi I guess not surprisingly I have received a letter cancelling my appt in October as I'm 'stable' and can 'safely' be discharged back to my GP. I'm really...

Hi I guess not surprisingly I have received a letter cancelling my appt in Octo...

huds

•11 years ago

6 Replies

Has anyone have brain fog with ANTIPHOSOLIPID syndrome?

Lexi_Img

•11 years ago

16 Replies

Has anyone had problems with Insurance companies?

3 years ago I had DVT following a knee operation. I was treated and discharged by my local hospital after 6 months and advised to take aspirin as a...

3 years ago I had DVT following a knee operation. I was treated and discharged b...

BTR1963

•11 years ago

8 Replies

Where can I buy strips Can't get them on prescription any more. Where is the cheapest place to get them. Thanks

panda60

•11 years ago

6 Replies

Which Graham Hughes book would you recommend

Which Graham Hughes book would you recommend as a first book. Mostly I am interested in symptoms like fatique, memory problems, headache and MS -like symptoms....

Which Graham Hughes book would you recommend as a first book. Mostly I am intere...

Leenalina

•11 years ago

1 Reply

Self testing problems with GP and Warfarin nurse

I was diagnosed with Hughes Syndrome a couple of months ago by Professor Hughes. He advised my GP to start me on Warfarin as quickly as possible to prevent...

I was diagnosed with Hughes Syndrome a couple of months ago by Professor Hughes....

AvsG

•11 years ago

32 Replies

After a week of feeling awful i have found out I have mumps ! Hideous - has anyone else with hughes had it as an adult any tips?

Worse part for me are the constant terrible headache and spiking temps - anyone found anything that helps?

Worse part for me are the constant terrible headache and spiking temps - anyone ...

sangje

•11 years ago

3 Replies

A great event if you live in London - charity Auction

HDA Patient Care, The Honorary Doctors Association, who greatly supportive around the subject of Hughes Syndrome and help raise awareness, and came along in...

HDA Patient Care, The Honorary Doctors Association, who greatly supportive aroun...

MaryF

Administrator•11 years ago

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why is my blood so dark

hi i just cut my leg n the blood started running down my leg such a dark red almost black any ideas i felt rough recently too

hi i just cut my leg n the blood started running down my leg such a dark red alm...

kezebabe

•11 years ago

1 Reply

Do you get Hand spasms?

Forgive me if this is a silly question but here goes. My hands often go into spasm - so I can not let go of something I am holding or I just can't move my...

Forgive me if this is a silly question but here goes. My hands often go into spa...

stillwaiting

•11 years ago

12 Replies

Kidney infection related to Hughes Syndrome and/or SLE?

Hi all, I was wondering whether a kidney infection is a common issue in Hughes Syndrome or SLE. I recently had one, my GP put me on amoxicillin for 5 days but...

Hi all, I was wondering whether a kidney infection is a common issue in Hughes ...

Sophia

•11 years ago

8 Replies

Is TIAs with several high antiphospolipid antibodies tests enough to be diagnosed with APS? Or do you need to have also deep vain tromboses?

Leenalina

•11 years ago

4 Replies

has anyone ever had psychometric testing with a neuroscience psychologist ? im currently going through it due to memory issues, disorientati

i would be grateful of any replies, i dont understand how these tests can diagnose lupus, ms dementia etc. Thank you for your time. i have also got a DLA...

i would be grateful of any replies, i dont understand how these tests can diagno...

dawnie1

•11 years ago

8 Replies

Possible Plaquenil side effects?

I'm new to Hughes Syndrome and it seems I have quite a lot of questions. My latest being: I started on 200mg/day Plaquenil 12 days ago and am experiencing...

I'm new to Hughes Syndrome and it seems I have quite a lot of questions. My lat...

MrsMouseSJ

•11 years ago

7 Replies

I'm using waferin at the moment 2 pills and there are some blood in my urine should I make it 1 and a half pills?

Ewoud

•11 years ago

8 Replies

Another long haul flight question. Help?! I'm so nervous!

I fly in 2 days from the US to Ireland (about 8 hours). First long haul flight since diagnosed. Only take low dose aspirin now. No clotting events to date,...

I fly in 2 days from the US to Ireland (about 8 hours). First long haul flight ...

Hilariew930

•11 years ago

6 Replies

Article from today's Telegraph

http://www.telegraph.co.uk/health/healthnews/10300644/Treat-heart-attacks-and-strokes-at-home-says-senior-doctor.html Mary F x

http://www.telegraph.co.uk/health/healthnews/10300644/Treat-heart-attacks-and-st...

MaryF

Administrator•11 years ago

5 Replies

Bruising

I was recently restarted on Plaquenil and I have been bruising all over. My legs are covered, and my arms are joining the party :( Before this I was on...

I was recently restarted on Plaquenil and I have been bruising all over. My legs...

momtomany

•11 years ago

3 Replies

Is sleep disturbance/autonomic dysfunction a feature of Hughes Syndrome?

For the past 8 years I have suffered from very disrupted sleep - sleep onset difficulties primarily but also periods of waking in the night and being unable to...

For the past 8 years I have suffered from very disrupted sleep - sleep onset dif...

MrsMouseSJ

•11 years ago

6 Replies

Central Series Retinopathy (CSR)

Hi All I asked at the hospital and the eye specialists said that there is no connection to Lupus or APS but thought I'd ask... I have had CSR for a number of...

Hi All I asked at the hospital and the eye specialists said that there is no co...

Hidden

•11 years ago

3 Replies

mum has hughes, im 45, last 2 yrs had ibs symptoms, roaming head + body pain, bouts of feeling all my energy has drained, should i get test?

coo67

•11 years ago

2 Replies

My dry eye treatment question

Thanks to everyone who responded. Haven't been on the site as have had a few bad days as the horrid mist and floaters iin my eye is really getting me down....

Thanks to everyone who responded. Haven't been on the site as have had a few ba...

panda60

•11 years ago

2 Replies

Baby

hi all, im a month short of my 30th birthday, my last pregnancy was a bit rough and bumpy but have a 10 month old beautiful baby girl. I was diagnosed with APS...

hi all, im a month short of my 30th birthday, my last pregnancy was a bit rough ...

katrinahug03

•11 years ago

3 Replies

My husband suffers from 'spells'. They come on suddenly and the dash of car starts 'rolling' and he occasionally then vomits.

He also has pain that moves around from shoulders to knees, neck. The 'spells' plague him the most. He is very social, but since the second stroke, these...

He also has pain that moves around from shoulders to knees, neck. The 'spells' ...

grammy4him

•11 years ago

7 Replies

Tour de France Bike ride in aid of HSF

Hello Everyone... My Hubby, Ryan, has just signed up to ride the first stage of the Tour de France (1 day before the pros) next year in aid of HSF. We have...

Hello Everyone... My Hubby, Ryan, has just signed up to ride the first stage o...

kateb81

•11 years ago

3 Replies

Is there a table available on line that shows Warfarin quantity vs INR levels? Many thanks JamesH

JamesH

•11 years ago

4 Replies

Re my question regarding the site

Well I managed to paste my original question regarding things I would like to see changed to HU. Well my reply was, basically "we like to hear your feedback if...

Well I managed to paste my original question regarding things I would like to se...

Jade

•11 years ago

2 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for September 2013

I have primary APS and I get one cold hand after running, what could cause this??

hello

Questions - APS

Been discharged does anyone know where I can good get information on seronegative as I'm back to square one and face another battle :(

Has anyone have brain fog with ANTIPHOSOLIPID syndrome?

Has anyone had problems with Insurance companies?

Where can I buy strips Can't get them on prescription any more. Where is the cheapest place to get them. Thanks

Which Graham Hughes book would you recommend

Self testing problems with GP and Warfarin nurse

After a week of feeling awful i have found out I have mumps ! Hideous - has anyone else with hughes had it as an adult any tips?

A great event if you live in London - charity Auction

why is my blood so dark

Do you get Hand spasms?

Kidney infection related to Hughes Syndrome and/or SLE?

Is TIAs with several high antiphospolipid antibodies tests enough to be diagnosed with APS? Or do you need to have also deep vain tromboses?

has anyone ever had psychometric testing with a neuroscience psychologist ? im currently going through it due to memory issues, disorientati

Possible Plaquenil side effects?

I'm using waferin at the moment 2 pills and there are some blood in my urine should I make it 1 and a half pills?

Another long haul flight question. Help?! I'm so nervous!

Article from today's Telegraph

Bruising

Is sleep disturbance/autonomic dysfunction a feature of Hughes Syndrome?

Central Series Retinopathy (CSR)

mum has hughes, im 45, last 2 yrs had ibs symptoms, roaming head + body pain, bouts of feeling all my energy has drained, should i get test?

My dry eye treatment question

Baby

My husband suffers from 'spells'. They come on suddenly and the dash of car starts 'rolling' and he occasionally then vomits.

Tour de France Bike ride in aid of HSF

Is there a table available on line that shows Warfarin quantity vs INR levels? Many thanks JamesH

Re my question regarding the site

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