Undiagnosed but myositis mentioned

Hello everyone,

I stumbled across this group as my twin sister and I have been on a horrid journey this last 8 months when both of us started getting distressing symptoms. At this point, still undiagnosed but myositis has been mentioned and I wanted to get some information if I can. I'd be grateful for any insight really.

Symptoms have been consistent and I believe, progressive. Hand tremor, terrible neck and shoulder pain that flares and then goes away, sore muscles and muscle aches (mainly forearms, upper arms, thighs and glutes), again this comes and goes. Muscle twitches that come and go, although mainly in the legs, they have been all over the place. We also have had some one sided alien like feeling.. which sounds odd but it's hard to describe. One side of the body can feel sort of off and floppy and there has been some finger and thumb dexterity issues when using our phones. There is definitely perceived atrophy in the neck, hands and feet, possibly also in the shoulders. We both also have bilateral brisk reflexes.

So, EMGs have been done at roughly 3 and 6 month marks and these have been unremarkable. I do have a high CK level and a normal NFL blood test result. I had an MRI of my thighs and calves which showed abnormalities. There is more water in the leg muscles than there should be. I don't understand what this means but my neurologist said it could suggest inflammation. He wants me to do more blood tests to look at muscle antibodies and he also wants me to have a muscle biospy.

I'm terribly frightened of conditions like ALS and muscular dystrophies but myositis was mentioned and I don't know much about it. Apparently my symptoms don't fit all that well but I wondered if my experience so far has been similar to anybody's here? I'm looking for as much information as I can glean as I'm in a bad place, mentally and physically speaking.

Thank you so much in advance