Posts - Myositis UK | HealthUnlocked

Myositis UK

1,284 members • 521 posts

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Expected new diagnosis of Myositis and my concerns

I know pretty much most of this is in my Bio and is just a copy paste to introduce myself. Can be scary when you have been a relatively healthy person all...

I know pretty much most of this is in my Bio and is just a copy paste to introdu...

Sparky076

•14 days ago

2 Replies

dermamyositis ptosis

does anyone have myositis and ptosis or myositis and mg

stiff19

•21 days ago

4 Replies

My 11 year old has Myositis

Hello all, my 11 year old was suddenly taken ill early July this year (2024) and after a week in hospital was diagnosed with Myosotis. She currently is not...

Hello all, my 11 year old was suddenly taken ill early July this year (2024) and...

Jayneepoo

•1 month ago

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Pm scl 100

Brychni 23 hours ago•3 Replies Hello 👋 I posted this message on the Raynaud's and scleroderma group but after some research wondered if anyone here can...

Brychni 23 hours ago•3 Replies Hello 👋 I posted this message on the Raynaud's ...

Brychni

•2 months ago

3 Replies

Gochujan

My GP discovered that I had elevated liver enzyme 7800 April 23 and sent me an ambulance to be thoroughly checked and went through CT San, MRI etc, seen by...

My GP discovered that I had elevated liver enzyme 7800 April 23 and sent me an a...

Gochujan

•2 months ago

5 Replies

Myositis UK Newsletter "Myositis News"

The Summer edition of "Myositis News" is now available online. https://www.myositis.org.uk/wp-content/uploads/2024/07/Myositis-News-Summer-2024.pdf

The Summer edition of "Myositis News" is now available online. https://www....

Jo-Goode

Administrator•2 months ago

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Where is the conference please ?

Where is the conference please ? Kind regards Carol

Daisydumplin

•3 months ago

2 Replies

Myositis UK Conference 14th July 2024

This years Myositis UK AGM & Conference is approaching, but still time to book a place 🙂 It will be held on Sunday 14th July 2024 at the Woodland Grange,...

This years Myositis UK AGM & Conference is approaching, but still time to book a...

Jo-Goode

Administrator•3 months ago

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support/ help

My husband has been in hospital since the 26th of May, he was a patient for 6 days before we had a diagnosis of dermatomyositis. He is currently in intensive...

My husband has been in hospital since the 26th of May, he was a patient for 6 d...

Cornwall24

•3 months ago

11 Replies

REFERRAL TO THE FORUM

"Long time member of PMRUK. What I thought was r/o, new physical evidence has brought me here. The PMR community has been great for the past 2 years, but they...

"Long time member of PMRUK. What I thought was r/o, new physical evidence has br...

SMH4CRNA

•3 months ago

1 Reply

diagnosed 4 days ago IBM never heard of it before so gathering as much info as i can in preparation

diagnosed 4 days ago INM never heard of it before so gathering as much info as I can in preparation

diagnosed 4 days ago INM never heard of it before so gathering as much info as I...

Myperu20

•3 months ago

1 Reply

Hi Guys

Hi, Well where to start?? My left eye went purple /red a few weeks ago and we thought it was an eye infection. 5 day course of antibiotics and it seemed to...

Hi, Well where to start?? My left eye went purple /red a few weeks ago and we ...

mrdarcy1

•3 months ago

2 Replies

New here

I think I put this in the wrong thread originally so I’m re sending, hopefully in the right place. Hello. I’m new here. My name is Lilia. I have...

I think I put this in the wrong thread originally so I’m re sending, hopefully i...

LiliaM

•3 months ago

2 Replies

Dermatomyositis - is it cyclical?

I’m still awaiting formal diagnosis. Tested positive for Anti Mi2, ANA 360 and had rashes across my neck, shoulders, eyebrows, behind ears and side of head...

I’m still awaiting formal diagnosis. Tested positive for Anti Mi2, ANA 360 and h...

Mumofthreeandadog

•3 months ago

1 Reply

Having chest pain

Hello everyone. Still going through the phase of being diagnosed even though I do have a current diagnosis of mctd. But my Ssa Ro52 was positive and Ana 1:640...

Hello everyone. Still going through the phase of being diagnosed even though I ...

Jadaboo4

•3 months ago

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Newbie here.

Hi, I'm Ian. Sorry for this long post. Just found out today after a 7+ yr journey of trying to figure out what is wrong with me that I have markers for...

Hi, I'm Ian. Sorry for this long post. Just found out today after a 7+ yr journe...

Eogz

•4 months ago

13 Replies

mri results

evening forum keep waiting for mri result ( had mri scan 5 weeks ago). Rang rheumatologist secretary and have been told will be posted results this week(...

evening forum keep waiting for mri result ( had mri scan 5 weeks ago). Rang rhe...

50guy

•4 months ago

1 Reply

Depression

I'm 63 eorjed all my life then 5 years ago told I had polymyalgia in 2022 told I never had polymyalgia but did have Pernicious Anemia which made sense then...

I'm 63 eorjed all my life then 5 years ago told I had polymyalgia in 2022 told I...

Foxy619

•4 months ago

2 Replies

Any AGM/annual meeting planned for this year 2024?

Anyone any idea if any AGM/annual meeting is planned for this year?

SoonToBe

•4 months ago

5 Replies

mri scan

good evening Was wonder How long you waited for the results for mri scan. Thanks A

good evening Was wonder How long you waited for the results for mri scan. Tha...

50guy

•5 months ago

1 Reply

Help needed

Hi everyone, I've been lurking this forum for some time and thought I'd share my story. I am a 35 year old male; around 5 years ago I noticed muscle loss...

Hi everyone, I've been lurking this forum for some time and thought I'd share ...

Frost111

•6 months ago

10 Replies

having mri

good evening Booked in for mri scan of all my limbs next week, Bloods were normal. Excersising 4 times a week but over last to years have struggled with...

good evening Booked in for mri scan of all my limbs next week, Bloods were nor...

50guy

•6 months ago

8 Replies

pain control

looking for help in controlling pain ….affecting my day to day life badly

Shiner33

•6 months ago

2 Replies

pain control

looking for help in controlling pain ….affecting my day to day life badly

Shiner33

•6 months ago

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Physiotherapy

I was diagnosed in October last year and treatment (cyclophosphamide) was going well. No symptoms. I have finished that course and am now on mycophenolate...

I was diagnosed in October last year and treatment (cyclophosphamide) was going ...

CotswoldOx

•7 months ago

4 Replies

ck level

good evening Just wonderIng what sort of levels congas been . Before being diagnosed. Thanks A

good evening Just wonderIng what sort of levels congas been . Before being dia...

50guy

•7 months ago

8 Replies

Any experience of Therapy?

I am considering psycotherapy as I face up to the reality of this progressive, debilitating condition. Any general thoughts or experiences welcome but I...

I am considering psycotherapy as I face up to the reality of this progressive,...

Bluffeypompom

•7 months ago

1 Reply

Dermatomyositis self help group/ anyone in existence ?, please send me contact. I am based in Swansea, Wales. 07804849206

josecifuentes

angelsue

•8 months ago

1 Reply

Dermatomyositis

I have a friend who was recently diagnosed with Dermatomyositis. Is this group appropriate for this diagnosis?

I have a friend who was recently diagnosed with Dermatomyositis. Is this group a...

Zompopo1987

•8 months ago

5 Replies

family member in ICU

my brother is in the ICU in critical condition. They have diagnosed dermatomyositis. He’s not doing well. They wanted to put him in an induced coma but he has...

my brother is in the ICU in critical condition. They have diagnosed dermatomyosi...

Talulah23

•8 months ago

2 Replies

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Posts - Myositis UK | HealthUnlocked

Myositis UK

Expected new diagnosis of Myositis and my concerns

dermamyositis ptosis

My 11 year old has Myositis

Pm scl 100

Gochujan

Myositis UK Newsletter "Myositis News"

Where is the conference please ?

Myositis UK Conference 14th July 2024

support/ help

REFERRAL TO THE FORUM

diagnosed 4 days ago IBM never heard of it before so gathering as much info as i can in preparation

Hi Guys

New here

Dermatomyositis - is it cyclical?

Having chest pain

Newbie here.

mri results

Depression

Any AGM/annual meeting planned for this year 2024?

mri scan

Help needed

having mri

pain control

pain control

Physiotherapy

ck level

Any experience of Therapy?

Dermatomyositis self help group/ anyone in existence ?, please send me contact. I am based in Swansea, Wales. 07804849206

Dermatomyositis

family member in ICU

Search posts

Pinned Posts

Latest poll

Do you suffer pain with your Myositis?

Topics

Archive