Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,356 members • 10,544 posts

All posts for April 2016

Now we know why! Finally! "Hughes Syndrome"

Greetings everybody, I would like to share what I've been through in hopes to find some hope here or there. I just got diagnosed with Hughes Syndrome after I...

Greetings everybody, I would like to share what I've been through in hopes to fi...

•8 years ago

Botox -- for pain etc.

Hay all Has anyone had botox injections for the purpose of muscle spasms - and chronic upper and lower back pain . Good , Bad , indifferent ??

Hay all Has anyone had botox injections for the purpose of muscle spasms - and...

•8 years ago

Anyone with a shakey hand???

I'll try to make this short! Lol... Today my left hand started to shake! It feels like it's not yhere!!! It's a bit like a tremor! Can't seem to stop tho? I'm...

I'll try to make this short! Lol... Today my left hand started to shake! It feel...

•8 years ago

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

or

Gluten intolerance / Celiac

I am Gluten Free and have been for many years. However, I did not know about this problem until later in life. Has there been any link found to be associated...

I am Gluten Free and have been for many years. However, I did not know about th...

•8 years ago

Erractic Blood Pressure

I am recently diagnosed with APS. In the last few years by blood pressure has been erractic. The diastolic has been very high at times and other times normal...

I am recently diagnosed with APS. In the last few years by blood pressure has b...

•8 years ago

This Forum has made a difference in my life!!!

Just a quick note to all have helped me on this post! I'm amazed at the administrators and Kerstin! You r so dedicated to this cause! I and so indebted to all...

Just a quick note to all have helped me on this post! I'm amazed at the administ...

•8 years ago

The truth shall prevail!!!

Hi Kerstin! Thx for ur response! I must clear something I've been hiding since I've seen that NYC SPECIALIST IN APD ! This particular Doctor, He said some...

Hi Kerstin! Thx for ur response! I must clear something I've been hiding since I...

•8 years ago

Why do we just get brushed off by some medical professionals.

A couple weeks ago I was so exhausted, feeling unwell, sleeping constantly. I was diagnosed with Epstein Barr Mono. Last evening I started getting bad dizzy...

A couple weeks ago I was so exhausted, feeling unwell, sleeping constantly. I w...

•8 years ago

Stomach pain?

Anyone out there wake up with high stomach pain and nausea in the morning?

Anyone out there wake up with high stomach pain and nausea in the morning?

•8 years ago

Hot flashes?

Anyone have hot flushing- it is 100 times worse than hot flashes? Does it come with flares?

Anyone have hot flushing- it is 100 times worse than hot flashes? Does it come w...

•8 years ago

Sharp Pains

About a week ago I started getting these sharp knife like painful tingling in my hand, foot & thighs. I can move or put pressure on the area & its quits. It s...

About a week ago I started getting these sharp knife like painful tingling in my...

GirlfromTennessee

•8 years ago

Immunologist - What are the benefits of seeing one?

Hello...my 14 year old son has been diagoned with APS. We are working with a pediatric hematologist for medications, blood work, etc. He would like us to to...

Hello...my 14 year old son has been diagoned with APS. We are working with a pe...

•8 years ago

I have got to prove that I am having an INR test and my INR numbers ....to get a Warfarin prescription?! Anyone else been asked for proof?!

I went to my GP today... While putting in my repeat prescription for warfarin the lovely receptionist says that she would be unable to fill prescription until...

I went to my GP today... While putting in my repeat prescription for warfarin th...

•8 years ago

Recently diagnosed with Primary APS

Do not know how long I have had this. I did have a few early miscarriages in the first 2 months of my pregnancies. Almost miscarried my oldest son in the...

Do not know how long I have had this. I did have a few early miscarriages in th...

•8 years ago

Still not anti coagulated after 6 months!!! Soooo distressed!

Hi just an update! Going to Rheumy tomorrow! I finally listened to y'all and went in ambulance to hospital! Unfortunately no one ther ever heard of APS!!! I...

Hi just an update! Going to Rheumy tomorrow! I finally listened to y'all and wen...

•8 years ago

Antiphospholopid sydrome and short cervix

Hello all. I have resorted to this forum as i dont know anyone who is having the same trouble as i am. I have antiphospholopid sydrome and am 25 weeks...

Hello all. I have resorted to this forum as i dont know anyone who is having the...

•8 years ago

Professor Graham Hughes Monthly Blog April 2016

Monthly Blog April 2016 So soon after the March blog, here comes another. Like London buses – nothing for a while then two together. Hopefully I am making up...

Monthly Blog April 2016 So soon after the March blog, here comes another. Like...

Administrator•8 years ago

Hip and leg infections.

Hi I suffer with lower limb infections quite alot it's to the point I can not stand, sit and walking is so painful I collapsed, I was bed bound for a week...

Hi I suffer with lower limb infections quite alot it's to the point I can not st...

•8 years ago

Should I see a dr over this :-/ ?

Hi all, was diagnosed with APS last year and currently undergoing more tests after some positive results under a lupus antibody screening. I noticed last week...

Hi all, was diagnosed with APS last year and currently undergoing more tests aft...

•8 years ago

Neuropathy Symptoms?

Has anyone experienced symptoms of transverse myelitis or guillain barre? I experienced acute urinary retention for several days, part of which I had a...

Has anyone experienced symptoms of transverse myelitis or guillain barre? I expe...

•8 years ago

linking to APS on the web

Hi All I notice several of you advocate and educate others about Hughes Syndrome. I have a website for my business and wondered it I could put a link to the...

Hi All I notice several of you advocate and educate others about Hughes Syndrom...

•8 years ago

The mud run

My work (Nationwide) are all doing a sponsor mud run on 9th April for Hughes Syndrome as my son was diagnosed last year. So far they have raised over £500....

My work (Nationwide) are all doing a sponsor mud run on 9th April for Hughes Syn...

•8 years ago

hydroxychloroquine and swollen lymph nodes, sore throat...

Hi, before I go into panic mode, I thought I would ask advice regarding whether I should be in a panic! My doc did say to look out for sore throats when taking...

Hi, before I go into panic mode, I thought I would ask advice regarding whether ...

•8 years ago

New and concerned

My blood was recently tested positive for cardiolipin antibodies. My antibody level was 33 and considered weak but positive. I am scheduled for more blood...

My blood was recently tested positive for cardiolipin antibodies. My antibody le...

•8 years ago

Successful pregnancy stories

Hi I am new to the sight having recently lost my first daughter at 32 weeks. As a result of tests they now think I have APS, just waiting on second set of...

Hi I am new to the sight having recently lost my first daughter at 32 weeks. As ...

•8 years ago

1
2