Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,356 members • 10,544 posts

All posts for November 2016

PE with no treatment

Im wondering if I am the only person who had a major PE, 2/3 rds of my right lung is now blocked off and unusable, that didn't go to the ER or c a dr.? Its not...

Im wondering if I am the only person who had a major PE, 2/3 rds of my right lun...

SoulRebel-APS

•7 years ago

1 Reply

From the newspapers!

A mixture of articles, but do remember if you take any form of new supplement or drug, always check with your main medical consultant and or GP first! 1....

A mixture of articles, but do remember if you take any form of new supplement or...

MaryF

Administrator•7 years ago

2 Replies

Small vessel disease

Hi have any of you been told you have small vessel disease secondary to APS I have been diagnosed twenty years and more have had five Pes two strokes and...

Hi have any of you been told you have small vessel disease secondary to APS I ha...

margaretjo

•7 years ago

3 Replies

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

fRAGMIN

Feeling kind of lost .....hi i,m new and this is my 1st post , feeling rather scared shall i say ...lol .... had my 1st Fragmin injection yesterday .. and felt...

Feeling kind of lost .....hi i,m new and this is my 1st post , feeling rather sc...

jilly50

•7 years ago

16 Replies

Why a rheumatologist?

I have read many people who are treated by rheumatologist for Hughes Syndrome. Can some explain why they do? Even though I was diagnosed 12 years ago, I don't...

I have read many people who are treated by rheumatologist for Hughes Syndrome. C...

snorkle272

•7 years ago

13 Replies

As we suspected

http://www.independent.co.uk/news/uk/politics/dwp-fit-to-work-assessments-cost-more-than-they-save-report-reveals-a6801636.html MaryF

http://www.independent.co.uk/news/uk/politics/dwp-fit-to-work-assessments-cost-m...

MaryF

Administrator•7 years ago

9 Replies

CAPS patient working group

Hi everyone, Earlier this year a project was launched by RareBestPractice/EURORDIS to gather a panel of experts with the aim of producing a new guideline which...

Hi everyone, Earlier this year a project was launched by RareBestPractice/EURORD...

disloyalorder

•7 years ago

5 Replies

Lesion on brain

Had major stroke 2011. My target Inr is 4 . Just had an MRI scan which showed up a few tiny lesions ? Must of happened some time since my last MRI in 2013 what...

Had major stroke 2011. My target Inr is 4 . Just had an MRI scan which showed up...

Tim_Thorpe

•7 years ago

4 Replies

Legs giving out on me, Why?

Hello. I am new to this support group, but have been diagnosed with APAS for the past 12 years. I had 3 strokes, a bi-femoral bypass and graft for my legs, and...

Hello. I am new to this support group, but have been diagnosed with APAS for the...

snorkle272

•7 years ago

22 Replies

Interesting

1. https://www.theguardian.com/lifeandstyle/2016/nov/17/life-with-migraines-feels-like-creature-pushing-through-my-skull I wonder if the writer has had any...

1. https://www.theguardian.com/lifeandstyle/2016/nov/17/life-with-migraines-fe...

MaryF

Administrator•7 years ago

1 Reply

My name was Firefoxie on here but I had lost all names and contacts. I also had not been online because of health issues.

Hi Kerstin, I hope you are well, and your health has been as good as can be? And I've heard the weather has been very cold, I hope you don't suffer to much in...

Hi Kerstin, I hope you are well, and your health has been as good as can be? And...

Teanna

•7 years ago

17 Replies

Specialists

I might be being thick here and if I am I apologise but where do I find the list of Aps specialists I'm trying to find one in Cumbria or fairly near. any ideas...

I might be being thick here and if I am I apologise but where do I find the list...

margaretjo

•7 years ago

1 Reply

Therapeutic INR

Hi, I just wanted to thank everyone as i saw my PCP who handles my medications and INR. When I told her that everyone on this site is telling me I would be...

Hi, I just wanted to thank everyone as i saw my PCP who handles my medications a...

SoulRebel-APS

•7 years ago

9 Replies

Micro brain clots

Had MRI which showed up micro clots on my brain which must of happened since my last MRI in 2013 .what are micro spots on the brain ? And should I be worried...

Had MRI which showed up micro clots on my brain which must of happened since my ...

Tim_Thorpe

•7 years ago

6 Replies

Figs

Hi everyone I am craving figs at the moment really badly and I don't usually like them that much but at the moment I can't get enough the problem is that...

Hi everyone I am craving figs at the moment really badly and I don't usually lik...

margaretjo

•7 years ago

3 Replies

Hot flashes

Hi all, Does anyone have hot flashes as a symptom of APS? I am only 34. I'm wondering if this is yet another APS symptom or if I'm entering early...

Hi all, Does anyone have hot flashes as a symptom of APS? I am only 34. I'm w...

JuliesaidFutz

•7 years ago

29 Replies

Alaskan APS

Hi everyone, my name is Barb and I am in Alaska..

Grammy_B

•7 years ago

5 Replies

Abdominal bloating

For the last 3/4 I have been dealing with a lit of abdominal bloating. To me, I look very pregnant. I have gained weight due to lack of mobility and energy but...

For the last 3/4 I have been dealing with a lit of abdominal bloating. To me, I ...

SoulRebel-APS

•7 years ago

10 Replies

Specific APS specialist or do you mean hematologist and/ or rheumatologist(s)

It just dawned on me that being from different countries, some places call their doctors professors, so maybe there isn't a difference between "specialist"...

It just dawned on me that being from different countries, some places call their...

Wittycjt

•7 years ago

3 Replies

Never heard of this Hughes syndrome

I've got the blood disorders but never been told I was tested - and pretty sure not been tested fir this syndrome.

I've got the blood disorders but never been told I was tested - and pretty sure ...

Dianecells

•7 years ago

9 Replies

blood clots lungs

Hey everybody. I joined this site a while back as my boyfriend has Hughes Syndrome. He was diagnosed with it 1 year ago and has blood clots on the lungs. He...

Hey everybody. I joined this site a while back as my boyfriend has Hughes Syndro...

purplestars

•7 years ago

36 Replies

Light at the end of the tunnel update

Hi all.. just a quick update my inr today is 2.0 starting to feel a bit better going to try and walk around the walk with my waking frame ..... with a view to...

Hi all.. just a quick update my inr today is 2.0 starting to feel a bit better g...

Budleighgeorge

•7 years ago

2 Replies

A Note of Encouragement

I have not posted for a long time, but wanted to encourage all of you. My husband was diagnosed primary APS in 2003 after a stroke. He had another stroke in...

I have not posted for a long time, but wanted to encourage all of you. My husba...

grammy4him

•7 years ago

3 Replies

Good news

Hi all i posted a few weeks back that bbc are filming in st marys hospital in paddington london.... after speaking to the film team in the past weeks ...good...

Hi all i posted a few weeks back that bbc are filming in st marys hospital in pa...

Budleighgeorge

•7 years ago

1 Reply

NOAC USE FOR APS

Hi I haven't posted for sometime, but after 2 years and 3 strokes I am still not stabilised on Warfarin I'm either too high or too low and have to go in to...

Hi I haven't posted for sometime, but after 2 years and 3 strokes I am still not...

Danni33

•7 years ago

5 Replies

Micro or small dots on the brain

Had a MRI last month went to see prof hunt for results said since last MRI I had in 2013 new dots have shown up gotta go back and see here in 5 weeks time 😐 I...

Had a MRI last month went to see prof hunt for results said since last MRI I had...

Tim_Thorpe

•7 years ago

6 Replies

Update on Surgery

Hi everyone! Hope Y'All r doing well! I had my throats surgery yesterday! All went well! Now I just must wait to c why one side of my throat swollen? I have...

Hi everyone! Hope Y'All r doing well! I had my throats surgery yesterday! All we...

Debbweb01

•7 years ago

9 Replies

Light at the end of the long tunnel

Hi all .i pray that everyone is feeling well. i have not posted anything lately.. as i am still in hospital since the 30 of august. i am now looking down the...

Hi all .i pray that everyone is feeling well. i have not posted anything lately....

Budleighgeorge

•7 years ago

7 Replies

Off to the procedure

Well Since that last time i posted , been having bad cramps ,Dc said if they happen again off to the OR i would go for emergency surgery . Well I made it and 3...

Well Since that last time i posted , been having bad cramps ,Dc said if they hap...

jetjetjet

•7 years ago

14 Replies

CRISPR gene editing tool for sickle cell, maybe it could work for Hughes?

Check it out. Stanford Univ is thinking it has developed a tool to fix the diseased cells of the sickle cell patient, I wonder if something like this could be...

Check it out. Stanford Univ is thinking it has developed a tool to fix the disea...

Wittycjt

•7 years ago

2 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for November 2016

PE with no treatment

From the newspapers!

Small vessel disease

fRAGMIN

Why a rheumatologist?

As we suspected

CAPS patient working group

Lesion on brain

Legs giving out on me, Why?

Interesting

My name was Firefoxie on here but I had lost all names and contacts. I also had not been online because of health issues.

Specialists

Therapeutic INR

Micro brain clots

Figs

Hot flashes

Alaskan APS

Abdominal bloating

Specific APS specialist or do you mean hematologist and/ or rheumatologist(s)

Never heard of this Hughes syndrome

blood clots lungs

Light at the end of the tunnel update

A Note of Encouragement

Good news

NOAC USE FOR APS

Micro or small dots on the brain

Update on Surgery

Light at the end of the long tunnel

Off to the procedure

CRISPR gene editing tool for sickle cell, maybe it could work for Hughes?

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