polymiositis - Myositis Message Board

paruu · 01-09-2007, 07:34 PM

Hello im a 22 y/o male and I have been battling this disease since 2003 it first started when I was graduating highschool. I noticed the weakness around 3 months into having higher cpks it started at 36,000 cpks I was told by my doctor I shouldnt be able to walk but I never believed her, a little later I found out she was right =(. Well to the present im taking 80mgs of prednisone but I havent seen any progress. I have taken methotrexate <dont have the bottles infront of me sorry> and also have taken iv ig and still havent seen any progress please help me! any info would help me.

kiwi girl · 01-13-2007, 09:37 PM

Quote:

Originally Posted by paruu

Hello im a 22 y/o male and I have been battling this disease since 2003 it first started when I was graduating highschool. I noticed the weakness around 3 months into having higher cpks it started at 36,000 cpks I was told by my doctor I shouldnt be able to walk but I never believed her, a little later I found out she was right =(. Well to the present im taking 80mgs of prednisone but I havent seen any progress. I have taken methotrexate <dont have the bottles infront of me sorry> and also have taken iv ig and still havent seen any progress please help me! any info would help me.

Hi have your tried to findout about the blood product treatment? it is meant to be quite effective. Would mind telling me how you got yr diagnose, was only from yr high CK. Thanks

paruu · 01-16-2007, 12:46 PM

I had gotten my diagnosis from a high cpk level and from samples of my muscle tissue. Which blood treatment did you mean if there is one id love to know it

mrmuscle · 01-16-2007, 04:26 PM

You should get a blood test for -
Antinuclear Antibodies (ANA)
Sed Rate
(Also called ESR, or erythrocyte sedimentation rate)

When doctor thought i have myositis i had these blood test done along with CPK level. After the blood test i also did a EMG.

Goodluck...

paruu · 01-17-2007, 05:01 AM

ty soo much im going to ask my doctor this week about it