Hi I was diagnosed in June with dermatomyositis after a six month battle to get answers from the doctors who didn't know what was wrong after numerous blood tests... it took six months to find out what was wrong ... how quickly were u diagnosed ?
It took me a year to get a complete diagnosis. My internist thought I was having allergic reactions to some meds, so they took me off those. I had all sorts of allergy testing done and a lot of blood test done or at least as much as this doc could do. Finally, I got in at DUKE with a rheumatologist and finally after a biopsy and blood test I was diagnosed. Please don't get discouraged, it takes awhile to get the right course of meds. Good Luck!!
I was given my diagnosis in Oct. of 2012 after enduring over 12 years of no one knowing what the rash was and no one being able to find what was causing me to have such pain and muscle weakness. The doctor that finally discovered the problem was the originally dermatologist I had gone to about the rash I had. She remembered me and was surprised to see me in a wheelchair. Once I told her everything that had taken place she knew right away what it was, we were told that if the doctors did not suspect it being DM they would not order the right lab work needed to confirm it.
I now have a whole new group of doctors and together they are all working to slow down the progression of my DM.
It comes as no surprise to me the duration of time that it took for you to be formally diagnosed as I was in the same boat. My physical symptoms really started in September 2011 and could have been as early as May 2011 not resulting in a formal diagnosis of DM until January 2012. The prevalence of this condition effects 1 in 100,000 people a year and thus is a rare condition. I was in a near paralyzed state by the time I was diagnosed and was hoping that it would end either way. Fortunately I was diagnosed, treated and started the road to recovery. I am doing well but admittedly angry with my diagnosis as I imagine much of us with this diagnosis are. Hope you are doing well in your recovery.
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