Edinburgh Meetup Afternoon Tea - 7th October
Jo-Goode20 days ago
So far we have 19 attending the afternoon tea for our first meetup in Scotland.
Still time to join us!
sickofpm21 days ago
looks like I have it. I wondered why nothing was making any difference to my condition. consultant is running through my background notes an...
New study for IBM
Les15a month ago
Has anyone been asked to attend a new study for 9weeks about psychological affects helping IBM sufferers
10 Replies1 Like
sickofpma month ago
had the last scans/ cameras last week. completely clear of any lumps, tumours etc :0)
can get back to treating my condition now. I know it wi...
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New looking for advice pls
MissFG2 months ago
Hi I'm new on here but on Thyroid UK for Hashimotos & Lupus UK as I'm under Rheumatology for a positive ANA and connective tissue disease.
Myositis on facebook & Twitter
Jo-Goode2 months ago
Myositis Forum UK - facebook group administered by Jo Goode
Myositis UK's facebook page
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Paula's Broken Marathon
Please sponsor me to support my effort and/or in lieu of a birthday gift.
I am fast approaching the age where a mid-life crisis is inevitable...
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Marlene232 months ago
I was diagnosed with polymyositis just over twenty years ago.I was taking methotrexate and steroids at varying doses for most of that time,a...
Myositis Diagnosis Problems
spiceyandsugar2 months ago
Please can anyone help at all? After being diagnosed with sleep apnea, 6 months into treatment I deteriorated. I had joint infla...
Kimevans3 months ago
After running marathons coming down ill.in January took 6 months to finally be diagnosed after being told asthma even with so many symptom...
5 Replies1 Like
sickofpm3 months ago
recently been diagnosed. now on 50m steroids. thing is I've taking tablets for 6 weeks and they have made absolutely no difference. I can ba...
Myositis UK Afternoon Tea in Scotland!
Jo-Goode3 months ago
Myositis UK Afternoon tea in Scotland!
Dalmahoy Hotel & Country Club, Kirknewton, Nr Edinburgh, EH27 8EB
6 Replies3 Likes
Myositis UK Conference
Jo-Goode4 months ago
Looking forward to the 2017 Myositis UK Conference this Sunday 😀
On Saturday join us for Meet & Greet, whether you are staying at the hotel ...
2 Replies1 Like
Still no immunosuppressant
Goldyukr4 months ago
Hello all. Looking to hear from your experience. I have myositis (still haven't told me exactly what kind but seems to me to be polymyositis...
Myositis UK AGM & Conference
The Myositis UK AGM and Conference is fast approaching on Sunday 2nd July.
The conference is free to Myositis UK members and one partner/care...
Richard ran the Stockholm Marathon in 4 hours 11 minutes!
Myositis polymyositis help
gtn3010724 months ago
Have had moosijis for months now the dr said if could have been working for up to 4 or 5 before I new had to give up work but having real tr...
Goldyukr5 months ago
I'm in a bit of a flare up after overdoing it last week. Weak muscles, shaking limbs. However, for three days now I also have very blurry vi...
3 Replies1 Like
The last couple of haircuts I got, my hairdresser asked if my hair had started thinning (particularly when she was looking at the back of my...
Chair with vertical lift
Wighton5 months ago
Hi everyone, I have noticed several posts re chair with vertical lift (no tilt) but now I need to find out more I can't find the posts! Any ...
Interesting New Technology if you have IBM
bon-bon5 months ago
I hope I have been able to post this as it is quite interesting. It has been developed in Canada...
Manchester Afternoon Tea Meetup held on Saturday 20th May
Jo-Goode5 months ago
Over 40 people attended our Manchester Afternoon Tea Meetup on Saturday 20th May 😀
Many thanks to Dr Hector Chinoy, who gave an overview of ...
Fundraising for Myositis UK - Race at your Pace 100 mile walk in throughout May challenge.
SuzellaBuhlmann5 months ago
Hiya, I am so pleased to say that I have completed my challenge of 100 miles within the month of May 😀 I am not stopping there as i will se...
2 Replies3 Likes
Colin B's intro.
fbcburnett5 months ago
I am a 59 year old male living in london. I was formally diagnosed with Dermatomyositis in February 2017 having been admitted to The ...
3 Replies2 Likes
Just been diagnosed with polymyositis
gtn3010725 months ago
Hi need help been working all my life I am a 44 year old male with diabetìc all my life I have just be diagnosed with polymyositis the last ...
BYM 338 dosage shared
Two participants in the trial on the U.S. site were told what their dosages were. One received 3mg and one 10mg. Wondering if those involv...
New Study - Hiker’s Feet
A study lead by Lisa Christopher-Stine, M.D., M.P.H. identified “Hiker’s Feet” as a new skin finding in some p...
2nd Global Myositis Conference
Wishing all the myositis doctors, nurses, scientists, and physiotherapists a successful meeting at the 2nd Global Conference on Myositis, es...
Myositis and Exercise
SDRM5 months ago
Can anyone throw light on another issue I am interested in, related to myositis of skeletal muscle - thighs, buttocks, and sometimes lower l...
Closing this week! - Steroid Survey
Dear Myositis UK member,
We are working on a project about steroid tablets and their use in adults with myositis. We have created a short su...
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