Frustration Frustration Frustration

[Guest guest]

Well another road block. My neurologist called yesterday and cancelled my

appointment for Monday because she said my biopsy came back negative. She said

I have Benign CPK Syndrome. Whatever that is. She told me that the only test

that has consistently came back positive was that my CPK levels (muscle enzymes)

have been continiously elevated.

She doesn't want to run me through anymore tests but says that I need pysical

therapy again, she wants to put me onto water therapy, and says that there is

nothing that can be done for the cramps other than put me on a muscle relaxer

which I am already on.

I talked to her again today and said that I am not satisfied with this because

my symptoms are more than just the muscle cramping.

I asked her to refer me to Cleveland Clinic for another Biopsy. , Barry's

wife, has also recommended a doctor in Michigan so I am going to call them on

Monday.

If anyone else has experienced this kind of Diagnoses (Benign CPK Syndrome)

please let me know because I can't find anything on the net about it.

Thanks,