The results of tests are all negative - Myositis Message Board

Tokyo07 · 05-25-2007, 12:45 AM

I have a daughter who is 17years old. She was tested on polymyositis. But the results of all the tests which included electroneuromyography came out negative. Yet she still has symtoms like mustle pain & weakness, slight fever and general fatigue. Since the doctor could not give definite diagnosis which meant no treatment. He told us to just wait and see. We are not sure how long we will have to wait. We don't know if the condition gets better or worse over the period of time. I'd appreciate if anyone who had the same experience gives me suggestions what the best things to do while we are waiting.

vonboo · 05-27-2007, 11:22 PM

I had the same problem and although my CK was elevated for over a year and I had the muscle weakness etc they kept telling me it was a virus. Eventually after a year they did further tests which included a test for Jo-1 antibodies (these strongly indicate PM) and they found I have them. Ask your Dr if he has tested for these for your daughter.

My Dr says I have PM but it is so mild that it doesn't show up on the tests however he is only 70 to 80 percent sure I have PM so at the moment I am not taking any meds for it. I have however gone to a naturopath and have altered my diet and I am taking supplements and vitamins. I can tell you that my CK although not normal has gone down and I am generally feeling quite a bit better. You might want to try this too.

Good luck.

Tokyo07 · 05-28-2007, 07:29 AM

Thank you for sharing information. Our doctor eliminated the possbility of virus as soon as the results from her blood test came out.This resutls also included Jo-1 antibodies which turned out to be negative.

I appreciate your taking naturopath and it is working for you. We don't have naturopath in my country. What my daughter is trying out is active hydrogen water and supplement called Mannatech. I am hoping this will ease her condition or somehow the symtoms will disappear along the way.

Please take care.

fallenangel065 · 07-16-2007, 08:16 PM

I had the same exact problem a little over a year ago. I was 17 and experiencing the same problems and none of the tests came back for anything. The only ting that was obvious was that my CK was elevated. My best advice is to stand by your daughter. I had a hard time because everyone thought i was crazy and that only made it worse. Also, i wouldnt let them put her on any corticosteroids unless they know for sure because they just treated mye with prednisone and it only made it ten times worse and on top of that the drug has some horrible side effects that can affect your self esteem, especially considering that shes only 17 as i was. Eventually it went into remission and im hoping that it doesnt return. Just wait it out. Hope i helped

Tokyo07 · 07-17-2007, 06:22 AM

I am sorry to hear that your doctor put you on the drug. Yes prednison gives you side effects.The doctor examined my daughter again but the doctor could not find anything wrong. He said it is very unlikely that your daughter has polymyositis. Because of changes taking place inside body of teenage girls often they experience disease like condition without any apparent cause.
However your case was different since CPK was elevated whereas my daughter's CPK remained normal. I did not understand your doctor was not careful enough to prescribe prednison knowing the fact that it has strong side effects. But I am glad your are now off the drug and hopefully it will never return.