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New Member

Date Joined Jul 2014
Total Posts : 7
   Posted 7/28/2014 9:01 AM (GMT -6)   
☺️ Hello everyone! I'm new to this forum but not new to Dermatomyositis/Polymyositis. I see we have members with Myositis and wonder if there are a lot of us here. Years ago, I checked forums and only found a few of us. But I did a search here and found quite a few people dealing with it. I really want to find a forum to talk about the routines, challenges and triumphs of this illness it seems we are experiencing at increasing rates. Please let me know if you have either of these illnesses. I'm going to tell my story on my next post. Be well!

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 7/28/2014 9:39 PM (GMT -6)   
It is estimated there are about 50,000 patients with one or other of the myositis diseases: pm, dm, sIBM, and hIBM. Although there are no official estimates sIBM seems the most prevalent, then dm, then pm, and finally hIBM which is very rare. I personally believe there are more but they are misdiagnosed or have an overlap syndrome and not classified with a myositis disease.

I have never heard of someone actually diagnosed by a myositis expert with both pm and dm. They are entirely different B cell the other T cell. IBM is often misdiagnosed as PM only to be changed after not responding to treatment. There is no effective treatment for IBM at this time.

The Myositis Association has a website and community forums as well as a FB page. There are a number of FB groups for myositis if you are interested.

MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

New Member

Date Joined Jul 2014
Total Posts : 7
   Posted 7/31/2014 10:39 AM (GMT -6)   
Hi Bill and thanks for the info. Yes, my case is weird or misdiagnosed. At first they called it poly, then later called it Derma when I started getting rashes. But, the lead Neuro physican did several tests and concluded that my body and muscles were not functioning or 'acting' as though I have Poly or Derma. So I REALLY don't know. I'm just working with what I'm given. That's about all any of us can do. But I'm not going to stop looking, seeing or trying.
?? Be well!

I will say of the Lord, He is my refuge and my fortress: my God; in him will I trust. ~ Psalm 91:2
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