Re: Ann-Marie Re: Frustration Frustration Frustration

[Guest guest]

Hi ,

I am surprised that you have your results from your biopsy back so soon. Once

you get copies of the results, it will be interesting to see what they tested

for and what tests they actually did.

I am wondering if there is a Mito doc located in the Pittsburgh area. Is that

close to where you live? I know Pitts. has a Childrens Hospital and I think

another large Hospital also.

Ann-Marie

Frustration Frustration Frustration

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,

[Guest guest]

Ann Marie,

I actually live about 40 minutes from the Indiana border. My neuro that I have

now is a neuromuscular doc but not a mito Doc.

Ann-Marie peetie@...> wrote:

Hi ,

I am surprised that you have your results from your biopsy back so soon. Once

you get copies of the results, it will be interesting to see what they tested

for and what tests they actually did.

I am wondering if there is a Mito doc located in the Pittsburgh area. Is that

close to where you live? I know Pitts. has a Childrens Hospital and I think

another large Hospital also.

Ann-Marie

Frustration Frustration Frustration

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,