Muscle problems

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New Member

Date Joined Aug 2010
Total Posts : 1
   Posted 8/3/2010 11:51 AM (GMT -6)   
I recently had a bunch of tests done to see if I have lupus. The only test that came back positive was to see if I had muscle inflammation. The usually scale is 1-50, and the highest it should get if you are injured is 200. Well, mine came back at a score of 380. My doctor said I have Myositis. Though, that is a general term, and I don't know exactly what I have. Some of my symptoms are:
Continual fatigue
Muscle pain
joint pain
pain in my lungs and chest
muscle weakness
hard time doing normal things like climbing stairs
I will be going to another doctor whenever I can get an appointment, but it could be a while. So, does anyone have any suggestions as to what it could be? Or anything I could do to help?

flower woman
Regular Member

Date Joined Oct 2009
Total Posts : 40
   Posted 8/3/2010 12:26 PM (GMT -6)   
Hi there and welcome! It all sounds very familliar to a lot of us i'm sure,thing is though Lupus is a very fluctuating and complex condition which can mimic so many other deseases so it can take some months or even years to diagnose in some cases after many tests which can give less than clear results sometimes it takes years of monitoring to eventually be sure but i'd keep searching until you get the help you need since the sooner you get on the correct treatment the better if it's lupus! Hope you find the help you need and get some relief soon! x
SLE sufferer with APS on plaqanil,mepacrine,pred dose dependant on flares,asprin,omeprazole,calcichew D2,fluoxetine and various pain meds.

Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 8/5/2010 10:34 AM (GMT -6)   
You list the typical symptoms that accompany myositis diseases.  There are 3 types, polymyositis, dermatomyositis and inclusion body myositis.  PM attacks the muscle cells directly and DM attacks the vessels in the cells but the pattern of weakness around the hip and shoulder girdles are the same but there are usually skin manifestations with dm and not pm.  Both are treatable with prednisone, immunosuppressants, ivig, etc but there is no effective treatment for ibm. 
Ibm is a different disease and progresses very, very slowly over a period of years.  The pattern of weakness is different as well.
Did your doctors test your cpk, sed rate, or other markers of inflammation?  None of these are definitive but combined with your clinical symptoms your doctor can diagnose your disease.  Most myositis patients have a biopsy as that is often the only way to definitively diagnose if and which myositis you have.
You might want to go to the community forums on
Here are some information sites for you:
You need to make sure you find a rheumy or neurologist who is experienced treating auto immune diseases.  Large, teaching hospitals and clinics like Johns Hopkins, Northwestern, Cleveland Clinic are usually the best bets.
Make a complete list of your symptoms even if you don't think they are relative and take all the previous lab tests to your new doctor.  You might want to post on the myositis site and see if anyone can recommend a doctor or clinic near you.
I also post on that site (Bill Simeral) since I have lupus, scleroderma and pm.  My case was extreme and life threatening but I survived and have come back (not all the way) from being a quadriplegic and not being able to swallow less than 5 years ago.  Life if good again but it did a lot of damage.  I have never heard of a more severe case and most are eventually treatable and muscle weakness treatable with physical therapy. 
These are very rare diseases and NO ONE can tell you exactly how your case will progress or respond to treatment.  Every case is unique and that is why it is so important to find an experienced doctor or team of doctors.
Good luck.
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.
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