Cleveland Clinic Update, back in limbo as far as diagnosis

[Guest guest]

Earlier today I got a call from Dr. Tsao re. the emg and spinal tap I

had done a few weeks ago. He told me both test results were

essentially normal. I asked about the biopsy report, as my muscle

tissue was looked at again there, and it sounded like something

abnormal was found (report said, " accumulations of mitochondria, " and

to " consider this finding with clinical history. " ) Apparently this

doesn't mean anything. He caught me off guard, as I wasn't expecting

a call. I wasn't prepared with any questions. He left me with the

decision as to whether or not to have another biopsy done. As far as

he's concerned, I have clinical signs pointing to a mitochondrial

problem but nothing definitive. If I have another biopsy and nothing

is found then he said I don't have mito. I feel like I'm constantly

having to defend myself with the local docs as they like telling me

my symptoms are due to psychological reasons. This just gives them

more reason.

[Guest guest]

Hanna,

I'm so sorry to hear you didn't get an answer from your tests.

I can imagine how frustrated you feel about now. I do know exactly

how you feel about getting tired of defending yourself though. It

might be a good idea to do as Alice said... take a break from it all

for a little while - if you can.

How much does the " non-diagnosis " effect your treatment? (are you

being treated?)

Maggie

> Earlier today I got a call from Dr. Tsao re. the emg and spinal

tap I

> had done a few weeks ago. He told me both test results were

> essentially normal. I asked about the biopsy report, as my muscle

> tissue was looked at again there, and it sounded like something

> abnormal was found (report said, " accumulations of mitochondria, "

and

> to " consider this finding with clinical history. " ) Apparently this

> doesn't mean anything. He caught me off guard, as I wasn't

expecting

> a call. I wasn't prepared with any questions. He left me with the

> decision as to whether or not to have another biopsy done. As far

as

> he's concerned, I have clinical signs pointing to a mitochondrial

> problem but nothing definitive. If I have another biopsy and

nothing

> is found then he said I don't have mito. I feel like I'm

constantly

> having to defend myself with the local docs as they like telling

me

> my symptoms are due to psychological reasons. This just gives them

> more reason.