Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,727 members • 28,087 posts

All posts for January 2019

Anyone have any advice on standing up to doctors?

I've been treated so badly and been ignored and written off. I've been incredibly anxious and I have been assertive and they've done piece meal things like...

I've been treated so badly and been ignored and written off. I've been incredibl...

Sarah030609

•5 years ago

27 Replies

Why can't we get better representation??

Gotta vent. I just received and email from Lupus.org. They redesigned their website. I'll leave out my opinions on that for now. What really get me worked up...

Gotta vent. I just received and email from Lupus.org. They redesigned their webs...

katidid

•5 years ago

5 Replies

Ana negative again

Hi guys I’ve booked a privet appointment for tomorrow at the lupus center in London for tomorrow morning I’ve spent so long Being convinced it’s lupus .. as...

Hi guys I’ve booked a privet appointment for tomorrow at the lupus center in Lon...

Buckley123

•5 years ago

38 Replies

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Esa

Hi Hi Following from my email last week regarding re-applying for Esa as for the past 3 years i was in the support group. I am medically retired. From the...

Hi Hi Following from my email last week regarding re-applying for Esa as for th...

Cal66

•5 years ago

3 Replies

Help to bridge the communication gap between patients and doctors by completing the INTEGRATE online survey

Hi everyone, The European INTEGRATE project aims to develop a strategy for monitoring and treating chronic diseases by integrating patient’s perspectives (such...

Hi everyone, The European INTEGRATE project aims to develop a strategy for monit...

Paul_Howard

Partner•5 years ago

14 Replies

DHEA supplements?

Advice please! As I have frequently moaned about here, the last 3 years have resulted in a steadily increasing disability for me, especially with regards to...

Advice please! As I have frequently moaned about here, the last 3 years have res...

whisperit

•5 years ago

58 Replies

A cure for burning feet?

After months of constantly burning feet my feet are now frozen, all down to the weather. The only way I can warm them up is sitting in the car with the heater...

After months of constantly burning feet my feet are now frozen, all down to the ...

suzannah16

•5 years ago

8 Replies

Advice on talking to parents

Non- lupus post! So I got in a bit of an upset state this morning because sometimes when I talk to my parents they have a go at my tone when I don't intend...

Non- lupus post! So I got in a bit of an upset state this morning because someti...

Penguintaz

•5 years ago

2 Replies

I am new here..

Hi everybody, Last few months I started to have some type of red rash on my both cheeks..I dont have it on nose...so I started to think that it might be...

Hi everybody, Last few months I started to have some type of red rash on my both...

Vekiqf

•5 years ago

7 Replies

Pain under big toe

I get pain, in particular first thing in the morning, in the joint under my right big toe. So, as I put weight on it getting out of bed, going downstairs,...

I get pain, in particular first thing in the morning, in the joint under my righ...

marghay13

•5 years ago

8 Replies

Update on Yesterday’s Colonoscopy

The prep was most definitely the worst part: not really the effects of it because I don’t think, after a bad bout of diarrhoea during the early hours of...

The prep was most definitely the worst part: not really the effects of it becaus...

Lupiknits

•5 years ago

16 Replies

Hydrocephalus

I know I’m in the wrong group. Is there a group for those with hydrocephalus? I haven’t had surgery, just MRIs and a lumbar puncture. I have two out of three...

I know I’m in the wrong group. Is there a group for those with hydrocephalus? I...

Bch2248

•5 years ago

2 Replies

Hearing loss update

Just to let all of you who showed me so much support the last few weeks with my hearing loss know that after being on the steroids since end of last week I...

Just to let all of you who showed me so much support the last few weeks with my ...

lisa___s

•5 years ago

8 Replies

Rheumatology appointment success at last.

Appointment today finally got some results 😁😁 Told consultant I was happy being left to feel all alone to cope with this. Told her I couldn't get an...

Appointment today finally got some results 😁😁 Told consultant I was happy bein...

Bronn

•5 years ago

9 Replies

Frequent urination

Hi just wondering if anyone else has a problem with frequent urination? Mine can be up to 40 times a day. Had an ultrasound sound on my bladder but nothing...

Hi just wondering if anyone else has a problem with frequent urination? Mine can...

Hidden

•5 years ago

36 Replies

Pain under right rib and stomach only during the night.

Can anyone relate or give advice? Back probley a year ago I started to wake up in the night with pain in right side of belly which is the side I sleep on...

Can anyone relate or give advice? Back probley a year ago I started to wake up i...

4bre

•5 years ago

3 Replies

In the land of the 🧚🏻‍♀️

Hi everyone I have a query . Just lately I have been feeling a bit in the land of the fairy’s . Totally not with it carnt remember simple things . Going into a...

Hi everyone I have a query . Just lately I have been feeling a bit in the land o...

barbdockeray

•5 years ago

4 Replies

I’m new here

55 year old male, married with two adult children, dog and cat. Small business owner working full time from Minnesota.

55 year old male, married with two adult children, dog and cat. Small business o...

SCOOTER4444

•5 years ago

10 Replies

STRAWBERRIES ARE BACK ON HIGH DEMAND BY MY FRIENDS 😘😘😘

🍓🍓🍓 MY OLD PROFILE PIC ......

Naz2005

•5 years ago

7 Replies

I’ve gone from being a possible mental case to full on bombardment with different specialist appointments 😥 possibly Dermatomyositis

So I’m just another case with the same old story “symptoms are in your head” “you need a mental health referral” You’d think this day in age people are...

So I’m just another case with the same old story “symptoms are in your head” “yo...

Lisalou19

•5 years ago

34 Replies

Positive ana then negative?

Hi my ana was positive and recently had I checked privately through medichecks. It's came back negative. Still in the process of trying to get a diagnosis. Has...

Hi my ana was positive and recently had I checked privately through medichecks. ...

Hidden

•5 years ago

33 Replies

JUST WANT IT ALL TO STOP 😭😭😭

😭😭😭

Naz2005

•5 years ago

9 Replies

Moving (relocation) and lupus

Hi friends! I hope you are doing well! I have been feeling better until a few days ago after I came back to Colorado. I have been traveling in Europe for my...

Hi friends! I hope you are doing well! I have been feeling better until a few da...

linicole

•5 years ago

3 Replies

SLE & Lupus Nephritis, now liver problems

Hi Everyone Just looking for advise or even a bit of reassurance.... So currently on steroids and imunosuppresants and 6 monthly doses of rituximab for SLE &...

Hi Everyone Just looking for advise or even a bit of reassurance.... So currentl...

MOOG144

•5 years ago

4 Replies

Oh Noooo! Sympathy and suggestions please.

I’m due to have a colonoscopy on Tuesday and am not looking forward to the prep for it. Yesterday I had an incredibly swollen stomach: 6 month preggers size. I...

I’m due to have a colonoscopy on Tuesday and am not looking forward to the prep ...

Lupiknits

•5 years ago

37 Replies

Allergy skin testing / Cutaneous lupus

I have cutaneous lupus and sjogrens. Had to go to ENT doctor because of have sinus issues for 6 weeks. The ENT feels that it could be allergy related. I was...

I have cutaneous lupus and sjogrens. Had to go to ENT doctor because of have sin...

Jances13

•5 years ago

10 Replies

arthritis

I think I know why my rheumy is so dismissive of my arthritis, I have the wrong type. Apparently it is rheumatoid arthritis that goes with autoimmune issues...

I think I know why my rheumy is so dismissive of my arthritis, I have the wrong ...

suzannah16

•5 years ago

32 Replies

New Year - New Ideas

Hi lovelies! Wondering if you all could give me your feedback. I’m gonna go out on a limb and “come out” to the public. Hello world, I have Lupus! (I’ve been...

Hi lovelies! Wondering if you all could give me your feedback. I’m gonna go out...

katidid

•5 years ago

6 Replies

Young people with Lupus

Hi Im Jess, Im 23 and Ive had Lupus SLE since 2011. I've just recovered after a severe flare up of Lupus in my brain and a long hospital stay. I have flare ups...

Hi Im Jess, Im 23 and Ive had Lupus SLE since 2011. I've just recovered after a ...

JessR1995

•5 years ago

5 Replies

Plaquenil, Amitriptyline and now Cymbalta

Hi Again, (this is a followup to a previous post) So I went to see my regular doctor as a couple of you had suggested. I explained about waking up hot and cold...

Hi Again, (this is a followup to a previous post) So I went to see my regular do...

patmackfin

•5 years ago

6 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for January 2019

Anyone have any advice on standing up to doctors?

Why can't we get better representation??

Ana negative again

Esa

Help to bridge the communication gap between patients and doctors by completing the INTEGRATE online survey

DHEA supplements?

A cure for burning feet?

Advice on talking to parents

I am new here..

Pain under big toe

Update on Yesterday’s Colonoscopy

Hydrocephalus

Hearing loss update

Rheumatology appointment success at last.

Frequent urination

Pain under right rib and stomach only during the night.

In the land of the 🧚🏻‍♀️

I’m new here

STRAWBERRIES ARE BACK ON HIGH DEMAND BY MY FRIENDS 😘😘😘

I’ve gone from being a possible mental case to full on bombardment with different specialist appointments 😥 possibly Dermatomyositis

Positive ana then negative?

JUST WANT IT ALL TO STOP 😭😭😭

Moving (relocation) and lupus

SLE & Lupus Nephritis, now liver problems

Oh Noooo! Sympathy and suggestions please.

Allergy skin testing / Cutaneous lupus

arthritis

New Year - New Ideas

Young people with Lupus

Plaquenil, Amitriptyline and now Cymbalta

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