Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,443 members•10,641 posts

All posts for May 2014

Teachers's Pensions Agency (UK)

I would be interested to know if anyone with APS / APLS antiphospholipid syndrome, or Hughes syndrome, and other disorders ( rhinitis, asthma, Factor V Leiden,...

I would be interested to know if anyone with APS / APLS antiphospholipid syndrom...

NialSeamusDubhglas

•11 years ago

16 Replies

Feeling upset and confused

Today I went to the ENT specialist who has said he is almost certain I have sleep apnoea. I shall spend tonight wired up to machines to confirm then it's off...

Today I went to the ENT specialist who has said he is almost certain I have slee...

phoenix77

•11 years ago

11 Replies

Can you have "sero-varying" Hughes Syndrome?

My daughter (21) has been unwell with a host of horrible symptoms for the past 6 years - bodywide pain, reduced and varying function in left arm/leg with no...

My daughter (21) has been unwell with a host of horrible symptoms for the past 6...

floss112

•11 years ago

11 Replies

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MS or APS or both

Hi to everyone. I am new here and is concerned about APS. In 2012 I became numb from waist down. I had unsteady gait and burning pain plus other symptoms....

Hi to everyone. I am new here and is concerned about APS. In 2012 I became numb...

Preserved

•11 years ago

35 Replies

Smile it's worth it!

http://www.netdoctor.co.uk/healthy-living/benefits-of-smiling.htm Have fun everyone.......it's good for you.......laugh often even if you fake or force it to...

http://www.netdoctor.co.uk/healthy-living/benefits-of-smiling.htm Have fun eve...

lloydyuk

•11 years ago

8 Replies

A really positive post about Hughes Syndrome/APS written and loaded onto HSF Facebook page by Kate H

Well done to brave Rianne for battling on following her stroke due to APS, and gaining a place at Aston university to study biomedical science. It must have...

Well done to brave Rianne for battling on following her stroke due to APS, and g...

MaryF

Administrator•11 years ago

8 Replies

Wondering if this was overlooked APS diagnosis?

http://www.dailymail.co.uk/health/article-2642605/Mother-died-agonising-pain-days-forced-crawl-hands-knees-beg-painkillers-cries-help-went-unheard.html

http://www.dailymail.co.uk/health/article-2642605/Mother-died-agonising-pain-day...

Hidden

•11 years ago

2 Replies

This was posted on Hughes Syndrome Foundation Facebook page, so felt it would be useful on here- via Kate H

We are appealing for a new mother to give an interview. Online resource, www.parentdish.co.uk, want to help raise awareness of Hughes syndrome as they are...

We are appealing for a new mother to give an interview. Online resource, www.p...

MaryF

Administrator•11 years ago

2 Replies

A sad article carried by The Telegraph and The Mail

A member sent this to me this morning, I hope we can all continue to raise awareness, as maybe this was another missed case....

A member sent this to me this morning, I hope we can all continue to raise aware...

MaryF

Administrator•11 years ago

4 Replies

I have itchy Palm's and little blisters on face, chest and arms any one else?

jewels1968

•11 years ago

4 Replies

Heparin...lump!

I take Clopidogrel and recently started using heparin. I've been getting on ok with the injections, I have had some bad bruising on my tummy. Today I noticed a...

I take Clopidogrel and recently started using heparin. I've been getting on ok w...

123mif

•11 years ago

2 Replies

Hi everyone i wonder if you can help me .I have APS sjrogens and lupus .I am on warfarin and self test.as I have been on prednisalone for a

number of years I have gained a lot of weight.However I have lost a sone and a half through slimming world weight watchers and exercise,howver the last couple...

number of years I have gained a lot of weight.However I have lost a sone and a h...

wales

•11 years ago

2 Replies

Possibly need root canal after having filling redone and is deep and close to nerve. On warfarin is there much bleeding with this treatment

Has anyone had this done when on warfarin?will it be done at my dentist or hospital, waiting to see if pain dies down but is slowly getting worse so think its...

Has anyone had this done when on warfarin?will it be done at my dentist or hospi...

beckyb

•11 years ago

8 Replies

GP refused to make referral

I had no idea that getting a simply. Referral could be so difficult. My GP has messed me about for the last 2 weeks and has now recommended I have blood tests...

I had no idea that getting a simply. Referral could be so difficult. My GP has m...

Dee121

•11 years ago

11 Replies

Can I motivate for checking my own inr levels as well as anticoagulant clinic?

What a relief to come across this forum! I was diagnosed with ALS about 15 years ago after 2 dvts a year apart. I have been on warfarin since and dose has...

What a relief to come across this forum! I was diagnosed with ALS about 15 year...

milo13

•11 years ago

5 Replies

Why does being prescribed warfarin seem overwhelming?

I collapsed Mon.Diagnosed in E&A with bloodclots on both lungs. Started Warfarin prog Tuesday. Because I live so close to Hospital I was sent home Wed. Now i...

I collapsed Mon.Diagnosed in E&A with bloodclots on both lungs. Started Warfarin...

themusiclover

•11 years ago

5 Replies

Could I have Hughes Syndrome and can it be reversed?

My mother after a lifetime of being unwell got diagnosed with MS, Lupus and Hughes Syndrome 6 years ago. I have been unwell since 19 with symptoms they just...

My mother after a lifetime of being unwell got diagnosed with MS, Lupus and Hugh...

Dizzyandconfused

•11 years ago

11 Replies

Absent from forum

Hi all at last I am back on the forum I love, without your help and gidance I have been a mess. I cleared out my pc and forgot to save certain web sites so...

Hi all at last I am back on the forum I love, without your help and gidance I ha...

Dottilind

•11 years ago

3 Replies

Doctor recommendation in Pittsburgh?

Does anyone have a Doctor recommendation in the Pittsburgh, PA area? I have family in Baltimore. Travel there would also possible.

Does anyone have a Doctor recommendation in the Pittsburgh, PA area? I have fami...

Hidden

•11 years ago

5 Replies

Newly Diagnosed with APS - cerebral venous thrombosis - 30 year old female athlete

Hello everyone! I was just diagnosed with APS after experiencing a cerebral venous thrombosis occurrence the beginning of April. I have been - in my mind at...

Hello everyone! I was just diagnosed with APS after experiencing a cerebral ven...

Hidden

•11 years ago

13 Replies

Pregnancy update

Hi everyone, thought I'd update to give others hope as this board helped me so much when in the depths of despair! I'm currently 32.5 weeks pregnant. Had a...

Hi everyone, thought I'd update to give others hope as this board helped me so m...

Hopingforababy

•11 years ago

11 Replies

Article from The Daily Mail

Part of Hughes Syndrome Awareness Month for May...

MaryF

Administrator•11 years ago

5 Replies

Sad news - this woman clearly had autoimmune disease beyond her reaction to the contraceptive pill.

http://www.telegraph.co.uk/news/uknews/10855338/Death-of-gymnast-sparks-calls-for-NHS-review.html MaryF

http://www.telegraph.co.uk/news/uknews/10855338/Death-of-gymnast-sparks-calls-fo...

MaryF

Administrator•11 years ago

11 Replies

High INR causing symptoms, too?

If my INR falls too low (for me) I get certain symptoms. So when, recently, I had marked tinnitus, dizziness, etc, I thought that must be the reason. An INR...

If my INR falls too low (for me) I get certain symptoms. So when, recently, I h...

MrsMouseSJ

•11 years ago

13 Replies

Any advise against side effects of Plaquenil?

My brain MRI came back clean, and, as I haven't had any clots yet (although I suffer from other symptoms), my APS doctor put me on Aspirin and Plaquenil. I...

My brain MRI came back clean, and, as I haven't had any clots yet (although I su...

danap

•11 years ago

50 Replies

I had in infected cyst under my armpit. It has been lanced and drained. Now I just have a small red area around the area. However, now I hav

have a burning sensation from just below my shoulder to my elbow. It seems to be around the main vein.

have a burning sensation from just below my shoulder to my elbow. It seems to be...

Biggd4355

•11 years ago

10 Replies

Most people seem to be on warfarin, but I refused because of collapsing several times with strokes, and I thought if my blood was too thin

and I collapsed I might have a brain bleed. I am on Persantin (Dipyridamole) which is for stroke prevention because I have had several full strokes. Is anyone...

and I collapsed I might have a brain bleed. I am on Persantin (Dipyridamole) whi...

pluto5

•11 years ago

14 Replies

National awareness

Thanks to everyone who liked and shared our charity's Facebook post today following the Daily Express article - over 15000 views! Yes - 15000! All of us...

Thanks to everyone who liked and shared our charity's Facebook post today follow...

Hidden

•11 years ago

20 Replies

Does APS affect eye sight?

I'm struggling with my vision and just wondered if APS would play a part in this. I was really frightened the other evening when I looked away from the TV and...

I'm struggling with my vision and just wondered if APS would play a part in this...

Dee121

•11 years ago

32 Replies

A round up of articles from UK press

1. The Daily Mail:...

MaryF

Administrator•11 years ago

22 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for May 2014

Teachers's Pensions Agency (UK)

Feeling upset and confused

Can you have "sero-varying" Hughes Syndrome?

MS or APS or both

Smile it's worth it!

A really positive post about Hughes Syndrome/APS written and loaded onto HSF Facebook page by Kate H

Wondering if this was overlooked APS diagnosis?

This was posted on Hughes Syndrome Foundation Facebook page, so felt it would be useful on here- via Kate H

A sad article carried by The Telegraph and The Mail

I have itchy Palm's and little blisters on face, chest and arms any one else?

Heparin...lump!

Hi everyone i wonder if you can help me .I have APS sjrogens and lupus .I am on warfarin and self test.as I have been on prednisalone for a

Possibly need root canal after having filling redone and is deep and close to nerve. On warfarin is there much bleeding with this treatment

GP refused to make referral

Can I motivate for checking my own inr levels as well as anticoagulant clinic?

Why does being prescribed warfarin seem overwhelming?

Could I have Hughes Syndrome and can it be reversed?

Absent from forum

Doctor recommendation in Pittsburgh?

Newly Diagnosed with APS - cerebral venous thrombosis - 30 year old female athlete

Pregnancy update

Article from The Daily Mail

Sad news - this woman clearly had autoimmune disease beyond her reaction to the contraceptive pill.

High INR causing symptoms, too?

Any advise against side effects of Plaquenil?

I had in infected cyst under my armpit. It has been lanced and drained. Now I just have a small red area around the area. However, now I hav

Most people seem to be on warfarin, but I refused because of collapsing several times with strokes, and I thought if my blood was too thin

National awareness

Does APS affect eye sight?

A round up of articles from UK press

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