Ann-Marie Re: Frustration Frustration Frustration

[Guest guest]

Ann-Marie,

I had a regular muscle biopsy in my left bicep, and ended up in the hospital

with a staff infection from it for a week. It was done at OSU Hospital in

Columbus.

I live near Xenia, Ohio.

Thanks for the support,

Ann-Marie peetie@...> wrote:

Hi ,

I am sorry that your biopsy didn't give you more information on your possible

Mito condition. It is always upsetting and sad when we don't find the answers we

are looking for after waiting for so long and reseaching for so long and finally

you think you have the Doctor you need to help diagnosis you, and then the

answers aren't forthcoming. I hurt for you, for I too have been down that rough

and bumpy road. I even took a few years off from searching for anwers, I was so

tired of going from one doc to another and not getting any answers. So I know

what you are feeling right now, and it isn't nice.

, was it you who had the * Needle Biopsy* done? And was it done on your

arm? What did your Neuro say when you asked her to refer you to the Cleveland

Clinic? Did she agree?

The only thing I know about CPK is that very high levels, usually in the

thousands puts Mito patients in the hospital with a Major Mito Crash or Crisis.

I agree with Mark, get all your files together, get the results of the biopsy,

get the slides, and any other information that they just gleaned from your

biopsy and make copies of them, one for you to keep and the other for the next

Doc that you see.

Good luck in your search. If I can be of any help please ask. btw, where do you

live?

Hugs,

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,