Polymyositis and MPN link
AnnaGarcia9 days ago
I would appreciate some feedback. In 1988 I was diagnosed with Polymyositis following a dreadful bout of the flu. I was 27 years old. ...
Hi, new here, and would like some help if you could please?
JDB196414 days agoPOPULAR
Hi Guy’s.. New here, but think I may be getting closer to my actual problem as time goes by.
I’ve had muscle aches and pains for years now (5...
New here, still waiting for treatment
helipops25 days ago
I’ve been back and forth to hospital since August presenting with muscle wasting. Have seen rheumatology, neurology and oncology. Latest thi...
Myositis UK Christmas Cards
Jo-Goodea month ago
Christmas cards are now available to order, 5 designs
Be the first to reply3 Likes
Angellealea1a month ago
Hi I recently had an EMG test because of my blood work & symptoms & inflammatory, I have Sjogren's Syndrome too.
I have a positive Anti-Ro an...
Hi I recently had an EMG test because of my blood work & symptoms, I have Sjogren's Syndrome too.
I have a positive Anti-Ro antibody & my EM...
Be the first to reply
Thighpain702 months ago
Hi im new, 48 male i hope its ok to post as im awaiting diagnosis and my ck results.
Then i assume its EMG and biopsy. Am i right in thinkin...
ukezza12 months ago
My brother was diagnosed with antisynthetase syndrome end of may. This was after going into respiratory failure and spend 7 wee...
New here 🙋🏼♀️
Penelope-Mary2 months ago
Hello I have found this forum through the lupus UK forum and thank you to whisperit for mentioning it!
I have had lupus for near...
2 Replies2 Likes
Re-posting a reply I wrote last year in respect to current PIP and benefit claims.
fbcburnett3 months ago
Hi, I have recently been awarded both PIP benefits after a long application process. My advice would be to print off all of the question to ...
1 Reply3 Likes
Myositis conference details?
Eliotf3 months ago
Does anyone have any links, summaries or other information on the conference which took place in June, for those of us outside the U.K.?
Be the first to reply1 Like
Myositis Forum UK
Jo-Goode4 months ago
If you use facebook you may be interested in Myositis Forum UK, it's a UK & Ireland only closed group (so you have to be a member to view/co...
The Myositis UK Conference - Oxford 24th June
Jo-Goode5 months ago
The Myositis UK conference is only one week away! We are also holding a Gala Dinner on Saturday 23 June, to recognise 30 years fighting rar...
3 Replies1 Like
Please support Dr Hector Chinoy
My clinical and research work involves looking after patients with myositis and trying to find new and more effective ways of managing the d...
2 Replies1 Like
Dr Helene Alexanderson
Exercise & Myositis This year we are very excited that Dr. Helene Alexanderson, from the Karolinska Institute in Sweden, is a guest speaker...
1 Reply1 Like
Myositis UK Conference Sunday 24th June 2018
Jo-Goode6 months ago
Myositis UK Conference - Sunday 24th June 2018
Invited speakers include:
Dr Helene Alexanderson, Karlinska Institute Stockholm, Dr Patrick ...
Follow Myositis UK on Twitter
Myositis UK Afternoon Tea Meetup Manchester 19th May
*** LAST FEW PLACES AVAILABLE ***
Myositis UK Afternoon Tea Meetup - Manchester 19th May
Guest Speakers: Dr Hector Chinoy & Dr Liza McCann ?...
New! Question about diagnostic tests
oogleboogle7 months ago
I'm new here and have not been diagnosed with myositis but have similar symptoms to this and fibromyalgia.
My question is, my bloods ...
Hello - investigations pending
whisperit7 months ago
Just to introduce myself - I've been on the LupusUK Health Unlocked forum for some time now, after a diagnosis of MCTD (with ILD and Raynaud...
7 Replies2 Likes
stillhoping7 months ago
Can anyone add to the message I posted six months ago? I did get some helpful comments then but wonder if anyone else has now had to undergo...
2018 London Marathon
Jo-Goode7 months ago
Congratulations to our three runners who completed the hottest ever (75F) London Marathon! 😬
Kate Buck 7 hours 30 mins
Arthur Macpherson 5 ho...
Be the first to reply4 Likes
Myositis Forum UK
I'm admin for a Myositis group on facebook, Myositis Forum UK, with over 700 members
2 Replies3 Likes
Meetup on Saturday
We have 40 attending the London Meetup on Saturday!
There are still a few places still available if you would like to attend.
Don't miss out...
The Meetup group has reached 150 members 😬
Don't miss out!
Join and email will be sent to you when future Meetups are announced meetup.com/MyositisUK/...
Diagnosed with Polymyostis
donnadt8 months ago
I'm still trying to get head round the idea that I even have Polymyostis. Was diagnosed last year in August & on high steroids. Trying to re...
10 Replies3 Likes
Myositis UK 30th Anniversary Gala Dinner & Annual Conference
Jo-Goode8 months ago
Myositis UK are celebrating 30 years as a registered charity!
To celebrate we are having a 30th Anniversary Gala Dinner on 23rd June, follow...
Myositis clinic in South East
Jan228 months ago
I am new here and was initially diagnosed with D M three years ago. My diagnosis after lots of tests is now A N C A Vasculitis with Myositi...
4 Replies1 Like
ANNUAL MYOSITIS CONFERENCE 2018
Tony-Burton8 months ago
Does anyone know the date of the annual Myositis UK gathering, normally held in July in Oxford.,
BBC Nicky Campbell 5 Live Radio Show
Michael spoke on BBC Nicky Campbell 5 Live radio show about Dermatomyositis and how the skin aspect is effecting his life.
Starts @ 18.00 to...
Start a Community