Recent diagnosis and Shocked

[Bkart]

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! 🥴😂

[Jo-Goode Administrator]

Sorry to hear about your diagnosis, it's quite a lot to get your head around. With treatment & physio/exercise symptoms do improve for those with DM (Dermatomyositis).

I was diagnosed in the early 90's aged 25, almost 30 years ago.

You might also like to join the larger UK only facebook group, which is a lot more active. facebook.com/groups/themyos...

Kind regards,

Jo - Myositis UK Trustee/Treasurer

[Bkart in reply to Jo-Goode]

Thank you for your reply Jo, and the encouragement. I’m not on Facebook but will look into joining. Sorry to hear that you were diagnosed at such a young age it must have been especially devastating for you. Best wishes.

[Lupiknits]

This must come as a huge shock after so long without a decent diagnosis or treatment and my heart goes out to you. x

[Bkart]

Hi Lupiknits, yes I don’t think it’s really sank in yet and as you say a huge shock. It feels very strange talking to you on this forum as well, I didn’t realise that you have DM together with all your other diagnosis too so I hope your keeping as well as you can be. I hope you don’t mind me asking questions occasionally. I’d just like to thank you for all your support together with OldTed and others on the Scleroderma forum, it means a lot. I’m continuing to post on the forum as I do have Raynauds, just wondering if it will be classed as Secondary Raynauds now, so many questions going through my mind. I’m determined to stay positive. Take care x