Randi Free Posted September 20, 2008 Report Share Posted September 20, 2008 My daughter is seeing a new doctor and he thinks all or most of her problems might be polymiositis and not POTS. She was hospitalized for 3 dyas in SApril unable to walk. At that time her CPK was 279 which is hisher than normal. Her cpk is now over 500. Her legs are still very painful, everything hurts all the time. Her heart rate is always high no matter sitting, laying down or standing and she continues to fall and have episodes where she cant walk unaided. I know there are 3 different types of polymissitis and one can effect heart rhythm. Has anyone else had a doctor suggest this or know anyone with it?Thanks,Randi Quote Link to comment Share on other sites More sharing options...
pat57 Posted September 24, 2008 Report Share Posted September 24, 2008 Good to "see" you, I was wondering how she was doing. I have to say no to your questions. I very much hope she finds an accurate diagnosis and effective treatment .good luck....... Quote Link to comment Share on other sites More sharing options...
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