Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,352 members • 10,541 posts

All posts for April 2014

Does anyone know of a doctor to monitor INR Levels & Familiar with APS in Manhattan in NYC?? (preferably affiliated with NY Presbyterian)

I have a great rheumatologist who is a lupus specialist and is very familiar with APS but does not monitor INR levels. I need an internist who is familiar...

I have a great rheumatologist who is a lupus specialist and is very familiar wit...

loretta1106

•10 years ago

4 Replies

My husband has been getting mysterious black eyes for no reason.... He has had about 8 in the past 6 months and coming more frequently...

No injuries or head trauma.... they only last a couple of days... always on the top eye lid... He never notices them, I do... They are no discomfort to him......

No injuries or head trauma.... they only last a couple of days... always on the ...

PinkHurricane

•10 years ago

2 Replies

Anyone seen APS specialist in Manchester?

Hi I have just been referred to the specialist on the list on the Hughes Syndrome website at Manchester (Oxford Rd). Was wondering if anyone else has seen him...

Hi I have just been referred to the specialist on the list on the Hughes Syndrom...

Sunshine39

•10 years ago

8 Replies

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

I have been told to be careful of not taking too many paracetomol on warfarin.

But what can I do instead for bad headaches. I've tried 4head and ice packs but some days they are so bad

But what can I do instead for bad headaches. I've tried 4head and ice packs but ...

Hidden

•10 years ago

12 Replies

Pregnancy induction and APS?

I'm 14 weeks pregnant. I lost two babies with 23 and 24 weeks pregnancy and I had several miscarriages. This pregnancy is the first after being diagnosed with...

I'm 14 weeks pregnant. I lost two babies with 23 and 24 weeks pregnancy and I ha...

Maira136

•10 years ago

9 Replies

Mention of Hughes in Different Strokes newsletter

This organisation was set up for younger stroke victims and I found them very supportive after I had mine in 1998. In the Spring Newsletter (no good at links!...

This organisation was set up for younger stroke victims and I found them very su...

panda60

•10 years ago

1 Reply

have been on betahistine 24 mg for about a month and noticed a little improvement for my dizziness.

do you think a higher dose should be taken or the current dose taken more than twice a day. I am really having a difficult time with this damn dizziness

do you think a higher dose should be taken or the current dose taken more than ...

packerfan

•10 years ago

12 Replies

Does anyone have any experience of the immunology dept at Frimley Park Hospital.

My GP wants to refer me to them to find out what on earth is going on with me.

phoenix77

•10 years ago

7 Replies

My fiance was diagnosed with mctd a several months back and now she is pooping out bright red watery blood with hardly any stool.please help

I called her Dr and she said with her diagnosis that she needed to be seen asap but my fiance is stubborn and I really need help with this I have to stay...

I called her Dr and she said with her diagnosis that she needed to be seen asap ...

onelife09

•10 years ago

9 Replies

How do you manage your fatigue?

Sorry to go on about 'the fog' - but I've managed the beast for over ten years now. I think that most of us who have any autoimmune disease learn to cope with...

Sorry to go on about 'the fog' - but I've managed the beast for over ten years n...

Hidden

•10 years ago

30 Replies

Does anyone have problems with continuous bouts of infections?

Over the past 4 weeks i have had 3 lots of medication on top of my usual medications, I have had a low white cell count for 5 years but not so low that the...

Over the past 4 weeks i have had 3 lots of medication on top of my usual medicat...

beckyb

•10 years ago

20 Replies

Took my second dose of warfarin last night and felt hot. Then when trying to sleep I had slight pins and needles in legs.

This morning my legs felt really heavy for a while. Is this because I have just started warfarin? I dont no my proper levels yet as I have first INR test...

This morning my legs felt really heavy for a while. Is this because I have just ...

Hidden

•10 years ago

12 Replies

i was in hospital for 2wks 3 times a day they gave me antibiotics now that im home im wake up wet in sweat pillow, shirt and all smelling

like antibiotics. and im constantly brushing my teeth im tasting it in my mouth it cause my breath to smell also. I want to know is that normal? If so how long...

like antibiotics. and im constantly brushing my teeth im tasting it in my mouth ...

crickett2

•10 years ago

3 Replies

ttc

as most of u are aware I have lost 6 babies due to aps. the last on clexane and aspirin at 9 weeks. the baby didnt develop past 6 weeks. but still survived to...

as most of u are aware I have lost 6 babies due to aps. the last on clexane and ...

sarahlou1801

•10 years ago

15 Replies

Help with a petition for those of us with Thyroid problems, alongside our Hughes Syndrome/APS

I know from my own experience with drug allergy, serious at times, that one size does not fit all. For those of us with terrible allergy problems to have a...

I know from my own experience with drug allergy, serious at times, that one size...

MaryF

Administrator•10 years ago

4 Replies

does anyone else get this and know what is it

Pain in elbows so bad it makes you cry, accompanied by fatigue, sometimes feels like there is a jelly like substance and when that is present any presure on...

Pain in elbows so bad it makes you cry, accompanied by fatigue, sometimes feels ...

donnabrain

•10 years ago

7 Replies

Is APS linked to other immune issues?

HI Has anyone else found that they have high readings for other immunoglobulins? I do believe this to be true - having one we are predisposed to others. E.g...

HI Has anyone else found that they have high readings for other immunoglobulin...

Sunshine39

•10 years ago

31 Replies

I've just been given warfarin tablets and doctor has said to take 10 mg today, 10 tomorrow and 5 Thursday then blood test friday.

Does the 10mg mean to take 2 of the pack with 5mg in. I'm abit confused as they have given me 4 boxes of different tablets.

Does the 10mg mean to take 2 of the pack with 5mg in. I'm abit confused as they ...

Hidden

•10 years ago

6 Replies

going to a new neurologist thursday

well i am going to a new nuro on thursday. my APS doctor said i need one that understands APS because he believes i have both APS and MS... i sent copies of...

well i am going to a new nuro on thursday. my APS doctor said i need one that un...

happee1

•10 years ago

14 Replies

Via KATE - Hughes Syndrome Foundation LONDON SUPPORT GROUP MEETING

The next London support group meeting is being held from 5.30-6.30pm on Wednesday 30th April in the Haemophilia Unit on the first floor of the North Wing in St...

The next London support group meeting is being held from 5.30-6.30pm on Wednesda...

MaryF

Administrator•10 years ago

1 Reply

How do you ask your family dr for a referral to a specialist. I don't want him thinking I doubt his ability. He's a good dr and listens

I have APS and possible other conditions. I am not sure. Need to be seen by someone that works in this field

I have APS and possible other conditions. I am not sure. Need to be seen by some...

Juejue11

•10 years ago

1 Reply

Anyone who was discharged from St Thomas's

Anyone who was discharged from St THOMAS'S should take the complaint to the Health Ombudsman. They can only look at individual complaints. I did include all of...

Anyone who was discharged from St THOMAS'S should take the complaint to the Heal...

bernieembleton

•10 years ago

17 Replies

Does anyone know of any good specialists in APS in Kansas? My family dr tries to understand and does listen. But lately having more issues

Juejue11

•10 years ago

10 Replies

Fragmin, Aspirin and Pregnancy Symptoms....

I was diagnosed with sticky blood three months ago and have have been on 2 x 75mg Aspirin and Fragmin injections for two months and both months have had very...

I was diagnosed with sticky blood three months ago and have have been on 2 x 75m...

donnao

•10 years ago

2 Replies

IAPS dx March 1st after a stroke affecting my speech. I have a rheumatologist & neurologist. Do I need a hematologist too?

I am Lipitor (80mg), Warfarin and Paquenil 400 mg. My GP has referred me to hematologist but can't see what he can do that my rheumatologist who is a Lupus...

I am Lipitor (80mg), Warfarin and Paquenil 400 mg. My GP has referred me to hem...

loretta1106

•10 years ago

13 Replies

Hello I had a bad stroke fours ago im 55 now it left mr with no use of my left hand I was a musician most of my life but can nolonger play t

I can nolonger play the guitar my fingets are very weak as is my hand will I ever be able to regain use of my hand when I try to play it feels very foriegn...

I can nolonger play the guitar my fingets are very weak as is my hand will I eve...

tommymack

•10 years ago

9 Replies

Need advice...

I'll try to keep this short..... Last Friday I had to pick my daughter up from school, she had a fever. By late Sunday night she was feeling much better only...

I'll try to keep this short..... Last Friday I had to pick my daughter up from s...

Mom3mmc

•10 years ago

4 Replies

Have a lovely Easter break everybody

My very own Easter bunny is 17 today. I hope everybody has a great holiday with friends, relatives and neighbours,....

My very own Easter bunny is 17 today. I hope everybody has a great holiday with...

MaryF

Administrator•10 years ago

8 Replies

What readings did anyone else get for APS?

I got 17 and 18 retrospectively for cardiolipin. I think this is low tier - I believe 0-10 is normal. I realise there are different tests done for APS so it...

I got 17 and 18 retrospectively for cardiolipin. I think this is low tier - I be...

Sunshine39

•10 years ago

10 Replies

Hair problems

Hi all, although minor compared to a lot of the symptoms and side effetc of hughes and medications does anybody else have terrible hair? Mine is just like...

Hi all, although minor compared to a lot of the symptoms and side effetc of hugh...

emmaj

•10 years ago

13 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for April 2014

Does anyone know of a doctor to monitor INR Levels & Familiar with APS in Manhattan in NYC?? (preferably affiliated with NY Presbyterian)

My husband has been getting mysterious black eyes for no reason.... He has had about 8 in the past 6 months and coming more frequently...

Anyone seen APS specialist in Manchester?

I have been told to be careful of not taking too many paracetomol on warfarin.

Pregnancy induction and APS?

Mention of Hughes in Different Strokes newsletter

have been on betahistine 24 mg for about a month and noticed a little improvement for my dizziness.

Does anyone have any experience of the immunology dept at Frimley Park Hospital.

My fiance was diagnosed with mctd a several months back and now she is pooping out bright red watery blood with hardly any stool.please help

How do you manage your fatigue?

Does anyone have problems with continuous bouts of infections?

Took my second dose of warfarin last night and felt hot. Then when trying to sleep I had slight pins and needles in legs.

i was in hospital for 2wks 3 times a day they gave me antibiotics now that im home im wake up wet in sweat pillow, shirt and all smelling

ttc

Help with a petition for those of us with Thyroid problems, alongside our Hughes Syndrome/APS

does anyone else get this and know what is it

Is APS linked to other immune issues?

I've just been given warfarin tablets and doctor has said to take 10 mg today, 10 tomorrow and 5 Thursday then blood test friday.

going to a new neurologist thursday

Via KATE - Hughes Syndrome Foundation LONDON SUPPORT GROUP MEETING

How do you ask your family dr for a referral to a specialist. I don't want him thinking I doubt his ability. He's a good dr and listens

Anyone who was discharged from St Thomas's

Does anyone know of any good specialists in APS in Kansas? My family dr tries to understand and does listen. But lately having more issues

Fragmin, Aspirin and Pregnancy Symptoms....

IAPS dx March 1st after a stroke affecting my speech. I have a rheumatologist & neurologist. Do I need a hematologist too?

Hello I had a bad stroke fours ago im 55 now it left mr with no use of my left hand I was a musician most of my life but can nolonger play t

Need advice...

Have a lovely Easter break everybody

What readings did anyone else get for APS?

Hair problems

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