My Doctor Visit Today

[Guest guest]

Well, I had a visit with my local specialist doctor who told me there

is no doubt in his mind I have mito. He actually apologized for how

I've been treated by other docs! He spent alot of time with me

answering questions and said that this area is still so new to many

doctors, therefore, many don't know what to look for when it comes to

signs and symptoms and lab tests. Apparently, alot of lab tests my

doctor ordered came back abnormal, while the same tests ordered by

Dr. Tsao came back normal. He told me tests often fluctuate though.

I asked my doctor today about my muscle biopsy report from CCF (they

looked at the tissue from my frozen biopsy) and he said that

accummulations of mitochondria are found in mito. Dr. Tsao told me

this didn't mean anything, even though the report stated " clinical

correlation is indicated. " Apparently it means something, or that

statement would not be there. My doctor is going to send my records

to Dr. Tsao although I really have no intention of going back there.

If I do decide to have another biopsy done it will be at Columbia

where I can see a doctor who has experience working with adults with

mito.

I asked my doctor today about testing for autonomic neuropathy. Dr.

Tsao stated in a letter to me he was considering that as a possible

diagnosis. When I recently called to ask when I would be scheduled

for testing, I was told " he misworded it " in his letter and just

wants me to have a fresh biopsy done. Good thing is I found out today

I can have autonomic testing done locally if I'd like.

I also found out today that the last test done to check my resting

lactic acid level was actually higher than the first test I had done

where I had to walk stairs for 5 minutes. I was feeling badly in

January so maybe the reason was that I had a buildup of lactic acid.

He actually thought the lab had me exercise before the test but I

told him no and he seemed surprised that it was so high. Hopefully

this doesn't mean my mito is getting worse.

I have to go for a sleep study, as I'm still having a terrible time

sleeping. Not sure what will be learned from it as I'm not very

familiar with a sleep study. I thought it was to rule out sleep

apnea, which I don't think I have. Maybe they can determine other

sleep problems as well.

I really happy that I have such a great doctor. I don't know what I

would do if it wasn't for him. Sorry for the long post, and for

letting me vent.

[Guest guest]

have to go for a sleep study, as I'm still having a terrible time sleeping. Not sure what will be learned from it as I'm not very familiar with a sleep study. I thought it was to rule out sleep apnea, which I don't think I have. Maybe they can determine other sleep problems as well.

Sleep studies also measure the quality of sleep. It will show how much time was spent in each stage of sleep by monitoring brain waves. HTH

e, Chelsea's mom (nonspecific mito)

[Guest guest]

have to go for a sleep study, as I'm still having a terrible time sleeping. Not sure what will be learned from it as I'm not very familiar with a sleep study. I thought it was to rule out sleep apnea, which I don't think I have. Maybe they can determine other sleep problems as well.

Sleep studies also measure the quality of sleep. It will show how much time was spent in each stage of sleep by monitoring brain waves. HTH

e, Chelsea's mom (nonspecific mito)

[Guest guest]

have to go for a sleep study, as I'm still having a terrible time sleeping. Not sure what will be learned from it as I'm not very familiar with a sleep study. I thought it was to rule out sleep apnea, which I don't think I have. Maybe they can determine other sleep problems as well.

Sleep studies also measure the quality of sleep. It will show how much time was spent in each stage of sleep by monitoring brain waves. HTH

e, Chelsea's mom (nonspecific mito)