Need help

[Nagjo2010]

Hello.I have severe dermatomyositis. I have been diagnosed 2 months ago. I have severe weakness in leg muscles to the point where I cant walk without help.

I am very confused and scared. I have liver and kidney infections and recently been told that I may have lung disease which is extremely worrying.

I want to see a private dermatomyositis specialist in the UK. Any suggestions? I really appreciate any help and support

[Catpuss66]

Join myositis community forum on FB , you get a lot more replies

[Nagjo2010 in reply to Catpuss66]

Right I will do that. Thank you Catpuss66

[Catpuss66]

Hi if you go on the Facebook community they have files ,which gives all the myositis is consultants in the uk . That might help

[hopegalore20]

Hi Nagjo2010, just seen your post and wondering how you are doing now?

Did you manage to see a Private Dermatologist? If yes, I hope he/she was able to help you going forward!

Like your good self, I have Dermatomyositis, I have lived with this condition for over 6 and half years now, my condition has worsened. It is still very active. I have tried several drug treatments. Presently on Prograf.

I also get worn out doing the simplest task and do require a walking stick and on other occasions, I have to use my wheelchair.

I do hope that you are making a good recovery.

Stay Hopeful 👍