Abby, something just popped into my head when I was reading one of your posts. Forgive me if we have already discussed this (me, brain fog).

Polymyositis seems to fit what you described. Here is a quote from the Mayo clinic website:
"Progressive muscle weakness is the most common polymyositis symptom. It typically affects the muscles closest to the trunk, such as those in your hips, thighs, shoulders, upper arms and neck. The weakness is symmetrical, affecting both the left and right sides of your body, and tends to gradually worsen. "
http://www.mayoclinic.com/health/polymyositis/DS00334


I remember a blog I found years ago -- when I was doing MG "research". The guy talked about searching forever for a doctor AND a diagnosis. Apparently, bloodtests do NOT always show antibodies with this disorder -- and it has a LOT of the same symptoms as MG.

Thank you, Jana! It makes me feel good to have all these friends I've never met who care about me anyway.

Annie mentioned polymyositis to me, too. I sort of pooh-poohed it, mostly because I have no pain (did I mention how grateful I am that I have no pain? I know that not everyone with MG can say that). But I see this is listed as a minor symptom.

I will talk to the doctor when I see him soon. I suspect he will tell me that the CK-serum test rules it out. Maybe it's time to repeat that test. I see that there are also specific antibody tests for polymyositis, and that sometimes MRIs can diagnose it. Or muscle biopsies.

Last time I saw my doctor, I was in the middle of a "good" period. I can see why he wasn't pushing to diagnose or treat this--I was doing quite well. Right now, I'm in the middle of a downswing. I'm going to call him right now and ask if he'll see me right away instead of November 2.

Thanks again. I really, really appreciate it. Thanks to you, too, Annie, for all the help you've given me. It's not just medical knowledge you pass on--it's seeing what a fine human person someone can be even when she's got a horrible disease. That is immensely important to me.

Abby

Abby, I am looking forward to hearing what you find from your doc. I have look at the polym info recently as they diagnosed myositis in my face but as that got better the long standing pain in my left thigh close to the joint went away too! I havent had an opportunity to discuss this with any of my docs yet. Please let us know what your doc says and how he approaches diagnosing.

Annie59

Abby,
I think I may have mentioned this in a post awhile back, but if you're thinking myositis please visit the Myositis Association website for patient information and for the discussion board. Look at the Community Forum under the Community tab. Polymyositis, dermatomyositis and inclusion body myositis affect different people in different ways. Some have pain (lots of pain) and some have very little, so don't let that be your guiding factor. Most, but not all, have elevated CK levels. The muscle biopsy is the gold standard for diagnosis. I'd give you the website but I'm not allowed to post that here yet. The folks on the discussion board there are a very caring, supportive and well-informed group.
Athena

Jana, just to follow up: I asked my doctor about polymyositis yesterday. He said that it would have shown up on my EMG, or in my CK or aldolase levels (all these tests were normal).

Thanks again for your help. Being familiar with all of this stuff is immensely helpful to me. It makes me feel more in control, and my doctor seems to take his cue from me, and give me all the details. This forum has been such a huge help.

Abby