I think I have Dermatomyositis??

[Benne09]

Hi all it’s my first time posting on myositis page.

My story like so many others is very long so will keep it short.

In 2018 was diagnosed with Behcets (even though not convinced) but was grateful in a way as this meant they would give me treatment. In Jan this year was told been misdiagnosed. Was not surprised at all by this!

I have had about 4-5 flares this year alone. I am on steroids, hydroxychloriquine and methotrexate.

My last Rheumy appt my consultant did a myositis panel but not got letter so not sure what these tests entailed. He hasn’t called me so I guess results are normal. My symptoms are rashes, joint pain, muscle aches/pain in thighs and arms. When I am down on steroids I cannot straighten my left arm and if I try it hurts like something is gonna snap.

I have red patches/slight sweetness that come and go everyday on knuckles and this was really evident for my consultant on the day I saw him. Rash on chest and top of back. I get swelling around my neck and back area too. Rashes up my neck also and my arms. I suffer in the sun. Fatigue is awful. Struggle to hold my head up during a flare, feels like my head to heavy for my neck.

I think I have Dermatomyositis but my question here is how were you diagnosed ? as I feel I need the next line of treatment but without a firm diagnosis I’m unable to get it.

Please answer me if you are able too as there isn’t that much information around.

Thank you all xxxx

[maidee]

Good morning. There is a uk myositis group on fbk. You are likely to get more support and answers from there. Most people tend to use fbk more than this site.

It really sounds like you are struggling. I know it took doctors almost 6mnths to diagnose me and by then i couldnt swallow or walk for that matter. I would call up the consultant and chase the results letter and find out if they intend to pursue it further. They prob did bloods to check for myositis anti bodies.

Good luck

[Benne09 in reply to maidee]

Thank you x

[Hidden]

It’s going to be difficult to make a diagnosis wgen you are taking steroids and Methotrexate, both of which interfere with your results. You need to discuss it with your Rheumatologist at your next visit,

[Benne09]

That’s what I said to him but he disagreed??? I know that if I come off of these I will be in bed unable to move. I can’t put myself or family through that.

Thank you so much for responding xx

[Catpuss66]

Lots of people pay to go privately with a myositis specialist , if you go on the FB group called myositis community of Great Britain & Ireland , they have files with all the consultants contact details. Might help x

[Benne09]

Thank you x

[hopegalore20]

Hi Benne09-I was diagnosed with Dermatomyositis over 7 years ago.I under went a Skin Biopsy which confirmed the Consultant's findings.

Another of your symptoms sound very familiar to me.

Please keep us updated on how things unfold for you.

Wishing you all the best in getting the right diagnosis.