12 years to diagnose dermatomyositis

[ItTook12Years]

New here and dropping in to say hi! Pasting what I put into my bio below. It took 12 grueling years to have my medical mystery named, but as most of you know - people can adapt to new normals in a pretty amazing way. Grateful to finally be heading down the road of a proper approach to treating dermatomyositis and will appreciate any small gains I get.

Was an enigma of a patient for 12 years. Hundreds of doctor visits, thousands of labs, many surgeries, yet stuck in a fairly stable state of “horrible” for the duration. Was told I had ALS, Narcolepsy, etc.. It was clear there was an autoimmune disease involved, but going by the textbooks, antibodies didn’t reveal which. Prednisone helped but I was kept at low doses. Finally after a very long road, a muscle biopsy confirmed it’s dermatomyositis. I’m thrilled that the condition was found before an autopsy :).

[Mustgetaroundtoit]

Gosh, that's a long wait! Your last line made me laugh, though obviously, in a dark humour kind of way😉 We do need little injections of humour to get through some of these trials.... And I'm happy that you have a diagnosis before then too! Keep taking your meds.. Keep smiling..and remember that there are others out there with wierd, difficult to treat issues.. You are never alone! Good luck for the future!😊

[stiff19]

I’m thrilled for you 🙌🏻 I have only been on my road for a few years opposed to your soundingly dreadful twelve, also an enigma 🤷‍♀️ Or is it just that because of the way the nhs works, with pot luck being of having interested doctors to see past everything having to show in bloods to get to an answer, the norm it seems. Undoubtedly things are complicated but without an interest in trying to solve the complications I fear many will find themselves on this long lonely damaging journey. Narcolepsy fnd fibro , whilst all conditions themselves should not be handed out as a cop off.

Here’s hoping you get the help you deserve finally and at least not hurt any more by unfitting labels. Glad you kept the strength to see it through to a diagnosis and wishing you all the best 🙏

[MouseO]

Hello! Oh how I can relate! Took 36yrs to get my 'juvenile overlap' personal mix diagnosed, then another 9 to pinpoint the DM, (only once I'd had a v bad flare that nearly finished me off! )Spent more time in hospital as a child than I care to think about...Then as an adult I saw soooo many specialists for symptoms/body parts over the years, no one put it together until my brilliant rheumatologist.

I also see a scleroderma specialist to help guide things because of my weird mixture.

So, now we juggle between what is active disease that needs treating, and what is permanent damage... Can be v confusing...

Hope you are getting proper treatment and care?

All the best. N