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Myositis UK

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Myositis - General posts

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Newly Diagnosed

Hi Everyone, Im hoping someone can help. Im 34 and I have been living with chronic pain for the past 11 years. It is only now that i have an amazing...

Hi Everyone, Im hoping someone can help. Im 34 and I have been living with chron...

•3 years ago

New name, same UK only Myositis community on facebook: The Myositis Community of Great Britain & Ireland

The Myositis Community of Great Britain & Ireland, with over 2000 UK & Ireland member...

The Myositis Community of Great Britain & Ireland, with over 2000 UK & Ireland m...

Administrator•3 years ago

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Do they routinely test back muscles during an MRI & EMG?

I'm due to have an MRI and EMG some time in the distant future (I'm in the UK and our NHS has all but ground to halt other than for Covid treatment). My...

I'm due to have an MRI and EMG some time in the distant future (I'm in the UK an...

•4 years ago

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2020 AGM and Conference - Oxford

2020 AGM and Conference Save the date! This year’s conference will take place on Sunday 14th June 2020 @ the Oxford Spires Hotel, Oxford. (please note...

2020 AGM and Conference Save the date! This year’s conference will take place on...

Administrator•5 years ago

Azathioprine didnt work,what next?

Hello Everyone I was diaganosed with Polymyositis 18 months ago. Was on 150mg Azathioprine and had tappered to 8mg prednisone daily. Unfortunately my hips, leg...

Hello Everyone I was diaganosed with Polymyositis 18 months ago. Was on 150mg Az...

•5 years ago

Walking distances with Myositis

Hi everyone, as yet I am undiagnosed but have classic symptoms of IBM or Polymyositis. I am 63 & this happened to me overnight late June this year. For many...

Hi everyone, as yet I am undiagnosed but have classic symptoms of IBM or Polymyo...

•5 years ago

Throat pain anyone?

Hi y’all. Suffering with some extreme choke style throat pain. Glands/nodes swollen around neck area and above. Lots of tightness when eating or drinking...

Hi y’all. Suffering with some extreme choke style throat pain. Glands/nodes swol...

•5 years ago

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Myositis UK Forum - on facebook

As well as this web based forum we also have a very active Myositis forum on facebook, with over 1,100 members....

As well as this web based forum we also have a very active Myositis forum on fac...

Administrator•6 years ago

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Myositis UK April Flyer

Myositis UK members! Look out for the April Flyer being sent to members, this includes conference details, reservation form to attend conference and...

Myositis UK members! Look out for the April Flyer being sent to members, this in...

Administrator•6 years ago

3rd Global Conference on Myositis Berlin, 27-30th March 2019

Myositis UK is proud to be the Gold Sponsor to the 3rd Global Conference on Myositis, which is held this week in Berlin 😬 The conference is an international...

Myositis UK is proud to be the Gold Sponsor to the 3rd Global Conference on Myos...

Administrator•6 years ago

3rd Global Conference on Myositis (GCOM2019)

Myositis UK will be attending the 3rd Global Conference on Myositis in Berlin (GCOM 2019) from 27-30 March. If any Myositis UK members have a question that...

Myositis UK will be attending the 3rd Global Conference on Myositis in Berlin (G...

Administrator•6 years ago

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Save the date for the 2019 Myositis UK Conference 😬

Save the date for the 2019 Myositis UK Conference 😬 This years annual Myositis UK Conference & AGM will be held on 23rd June 2019 @ The Double Tree by Hilton...

Save the date for the 2019 Myositis UK Conference 😬 This years annual Myositis ...

Administrator•6 years ago

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Antisynthetase syndrome

Hi everybody My brother was diagnosed with antisynthetase syndrome end of may. This was after going into respiratory failure and spend 7 weeks in intensive...

Hi everybody My brother was diagnosed with antisynthetase syndrome end of may. ...

•6 years ago

Myositis UK 30th Anniversary Gala Dinner & Annual Conference

Myositis UK are celebrating 30 years as a registered charity! To celebrate we are having a 30th Anniversary Gala Dinner on 23rd June, followed by the Annual...

Myositis UK are celebrating 30 years as a registered charity! To celebrate we...

Administrator•7 years ago

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This Valentine's Day #LoveYourHeart

This Valentine's Day #LoveYourHeart ❤️ Most people with auto immune disease do not know they are at an increased risk of developing a heart condition - take...

This Valentine's Day #LoveYourHeart ❤️ Most people with auto immune disease do...

Administrator•7 years ago

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New guide on Myositis by Hector Chinoy & Bob Cooper

New guide on Myositis by Hector Chinoy and Bob Cooper, aimed at physicians & trainees in the field of Rheumatology - £26.99 Oxford University Press A...

New guide on Myositis by Hector Chinoy and Bob Cooper, aimed at physicians & tr...

Administrator•7 years ago

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One week to the Myositis Christmas Meetup!

Only a week to the Myositis Christmas Meetup 🎄 😬 Free to Myositis UK members (membership free) Join @ http://www.myositis.org.uk/join.asp Meetup...

Only a week to the Myositis Christmas Meetup 🎄 😬 Free to Myositis UK member...

Administrator•7 years ago

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Yes, it's possible to have normal lab results and have Myositis...

Yes, it's possible to have normal lab results and have Myositis...

Yes, it's possible to have normal lab results and have Myositis...

Administrator•7 years ago

Myositis Meetup in Cambridgeshire!

Myositis Meetup for Coffee & Cake in Cambridgeshire! Costa Coffee, Ely Leisure Village (A10), Cambridgeshire, CB6 2WH RSVP...

Myositis Meetup for Coffee & Cake in Cambridgeshire! Costa Coffee, Ely Leisur...

Administrator•7 years ago

Manchester Afternoon Tea Meetup held on Saturday 20th May

Over 40 people attended our Manchester Afternoon Tea Meetup on Saturday 20th May 😀 Many thanks to Dr Hector Chinoy, who gave an overview of Myositis and...

Over 40 people attended our Manchester Afternoon Tea Meetup on Saturday 20th Ma...

Administrator•8 years ago

New Study - Hiker’s Feet

https://www.hopkinsrheumatology.org/2017/04/hikers-feet-new-skin-finding-patients-dermatomyositis/ A study lead by Lisa Christopher-Stine, M.D., M.P.H....

https://www.hopkinsrheumatology.org/2017/04/hikers-feet-new-skin-finding-patient...

Administrator•8 years ago

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2nd Global Myositis Conference

Wishing all the myositis doctors, nurses, scientists, and physiotherapists a successful meeting at the 2nd Global Conference on Myositis, especially those...

Wishing all the myositis doctors, nurses, scientists, and physiotherapists a suc...

Administrator•8 years ago

Statins and Myositis

Does anyone have any experience of muscle pain caused by statin medications? I have been taking a variety of statins for (I think) around 20 years, having been...

Does anyone have any experience of muscle pain caused by statin medications? I h...

•8 years ago

Survey Result

Results from survey "Do you have pain with your Myositis?" Yes 70 No 12 Myositis UK - Healthunlocked Yes 14 No 4 Myositis Forum UK (facebook) Yes 56 No...

Results from survey "Do you have pain with your Myositis?" Yes 70 No 12 M...

Administrator•8 years ago

Information, links & Myositis specialist clinics

Information, links & Myositis specialist clinics: Admin to Myositis UK Healthunlocked - Jo Goode. Diagnosed in 1994 with Dermatomyositis aged 25 and been a...

Information, links & Myositis specialist clinics: Admin to Myositis UK Healthun...

Administrator•8 years ago

New here!

Hi I'm a 31 year old type 1 diabetic. I was diagnosed with Myositis last week and have been on 20mg preds for 4 weeks while awaiting blood results. Feeling...

Hi I'm a 31 year old type 1 diabetic. I was diagnosed with Myositis last week an...

•8 years ago

Training as disease-modifying treatment

Interesting article about this great duo :-) Exercise in Myositis, Origins from the Karolinska Professor Ingrid Lundberg is chief physician at the...

Interesting article about this great duo :-) Exercise in Myositis, Origins fr...

Administrator•8 years ago

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Lovely afternoon & cake!

Meetup afternoon tea 11th Feb 2017

Meetup afternoon tea 11th Feb 2017

Administrator•8 years ago

Myositis UK on Twitter

You can now follow Myositis UK on Twitter :-) https://twitter.com/UKMyositis

You can now follow Myositis UK on Twitter :-) https://twitter.com/UKMyositis

Administrator•8 years ago

Myositis UK AGM & Conference

The AGM and Conference 2017 will be on Sunday 2nd July at the Oxford Belfry Hotel, Milton Common, near Thame, Oxford. The format for the day is as for previous...

The AGM and Conference 2017 will be on Sunday 2nd July at the Oxford Belfry Hote...

Administrator•8 years ago

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Do you suffer pain with your Myositis?

Topics

Myositis - General(48)

Dermatomyositis(24)

Myositis Fundraising(14)

Polymyositis(11)

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