Hi
I’m new to this site, I was diagnosed yesterday with Dermatomyositis, I’m having trouble pronouncing it let alone the spelling so hope I’ve got it correct. I’m now in a state of shock having spent the last three plus years under investigation for Scleroderma at a Specialist Scleroderma Unit in the Northwest. At my last appointment two years ago I was told that there was nothing wrong with me and that I had basically googled my symptoms and assumed that I had an autoimmune condition. My symptoms progressed, I then saw a private Consultant in London who diagnosed UCTD and offered to transfer me into his NHS clinic for further monitoring but we both agreed that the distance was too far to travel regularly. However he recommended that I continue to be monitored by my original Rheumatology Specialist Unit in the NW, an appointment was made this was then cancelled by the Unit and I have not been given a further appointment since, despite asking for one.
My symptoms have got so bad recently, I could barely walk and constantly tripping or falling plus debilitating pain and exhaustion along with many other symptoms. I booked another private appointment at a different hospital in the NW and was finally diagnosed yesterday with DM. Sorry to sound as if I’m moaning but I am so angry that I have been ignored and left without treatment for so long, I now have confidence that I am being listened to and with the right Consultant who was so kind. He referred me immediately into his NHS clinic and I’m now waiting for an inpatient appointment for I think MRI + CT scans, bloods and a muscle biopsy to confirm.
I am a big advocate for the ‘use it or loose it’ mentality and whilst I struggle with actual physical exercise as such, I do keep active as much as possible. Apparently my muscle weakness is severe and he was surprised that I was active at all. I know nothing about this illness and would really appreciate any help,information and guidance as to what may happen with regard to treatment and managing this condition. My Consultant did explain some of the options but I was too shocked to take it all in and ask further questions. I am what I hope is a young at heart 72 and I did ask if this could be just age related as other medics have previously suggested, but he said no definitely not. Sorry this is so long, just getting my frustrations out I guess but hopeful for any advice, thank you for reading this if you’ve got this far! 🥴😂
Dermatomyositis 
How do you get a firm Mysiotis diagnosis? What scans will show affects on muscles? 
Antisynthetase syndrome and Rituximab
Necrotising Myositis and leg pain
Could I have dermatomyositis?
