Anyone here with NAM?
MAuk4 days ago
Interested in medication options. I'm a type 2 diabetic but in control with a small dose of Gliclazide. Had a...
Rsheppard6 days ago
Hi I have dermatomyositis, treated with rituximab 10 weekly but am recently- last few months - suffering severe eye pain anyone experiencing...
Can I get IVIG?
MissFG11 days ago
Due to normal CK levels I’m not on steroids and don’t want to go on them either.
But consultants are saying there’s no obvious signs of muscl...
Eliotf17 days ago
I was dx with dermatomyositis sine myositis due to my Chronic Lymphocytic Leukemia (CLL). It took just over 6 months of biopsies, bl...
2 Replies1 Like
neater eater and the neater arm support
johnRobertson19 days ago
I have an appointment tomorrow with a representative of Neater Eater company, coming to the house to demonstrate two of their products. I...
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One week to the Myositis Christmas Meetup!
Jo-Goode21 days ago
Only a week to the Myositis Christmas Meetup 🎄 😬
Free to Myositis UK members (membership free)
Join @ myositis.org.uk/join.asp
Be the first to reply
VonnieD23 days ago
I've recently been diagnosed with Polymyositis. I'm due to see the rheumatologist for the first time and not sure what to expect. My hope fo...
12 Replies2 Likes
Fundraise for Myositis while you shop online at no extra cost
Jo-Goodea month ago
Fundraise for Myositis while you shop ⛄
Join easyfundraising and you can collect free donations for us every time you buy something online. I...
Myositis UK Christmas Draw
Tickets are now available for the Myositis UK Christmas Draw, with a top prize of £500🎄
1st Prize £500, 2nd £150, 3rd £50 & other prizes 🎁
Poly or IBM?
MissFGa month ago
Not long diagnosed but symptoms getting worse over weeks not months. Mycophenolate I couldn’t tolerate so waiting to hear from bloods if I c...
Challenges with Polymyositis and possible lung damage scarring
SouthernNInaa month ago
Hello, my dad has been diagnosed with polymyositis and as an affect of the medicines he has been taking his lungs have been damaged with sca...
4 Replies1 Like
P.E.G. (Percutaneous endoscopic gastrostomy)
stillhoping2 months ago
" Percutaneous endoscopic gastrostomy is an endoscopic medical procedure in which a tube is passed into a patient's stomach through the abdo...
Yes, it's possible to have normal lab results and have Myositis...
Jo-Goode2 months ago
5 Replies3 Likes
Total body inclusion myositis
Angelique672 months ago
My mother has been diagnosed with total body inclusion myositis and her neurologist told us there is no effective treatment so we have been ...
How to get diagnosed
Dougie2 months ago
Hi everyone, I'm new to this forum. I would appreciate any advice on getting investigated/diagnosed. Have been suffering fatigue for past ...
8 Replies2 Likes
Myositis Meetup in Cambridgeshire!
Myositis Meetup for Coffee & Cake in Cambridgeshire!
Costa Coffee, Ely Leisure Village (A10), Cambridgeshire, CB6 2WH
2 Replies2 Likes
Edinburgh Meetup Afternoon Tea - 7th October
Jo-Goode3 months ago
So far we have 19 attending the afternoon tea for our first meetup in Scotland.
Still time to join us!
sickofpm3 months 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
Les153 months ago
Has anyone been asked to attend a new study for 9weeks about psychological affects helping IBM sufferers
10 Replies1 Like
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
MissFG4 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-Goode4 months ago
Myositis Forum UK - facebook group administered by Jo Goode
Myositis UK's facebook page
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...
Marlene234 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
spiceyandsugar4 months ago
Please can anyone help at all? After being diagnosed with sleep apnea, 6 months into treatment I deteriorated. I had joint infla...
Kimevans5 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
sickofpm5 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-Goode5 months ago
Myositis UK Afternoon tea in Scotland!
Dalmahoy Hotel & Country Club, Kirknewton, Nr Edinburgh, EH27 8EB
6 Replies3 Likes
Myositis UK Conference
Jo-Goode6 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 ...
Still no immunosuppressant
Goldyukr6 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...
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