Re: Doctor Appointment Today

[Guest guest]

Hannah,

What a great update you had to share! I'm really happy you have a good understanding doc. I hope that he will be assertive in treatment and able to hel you feel better. Sleep Studies can tell your doc. a lot! Besides looking for sleep apnea they can detect restless leg syndrome, how much REM sleep you are getting, if you enter and exit sleep stages correctly and for the appropriate amount of time. They can also detect nocturnal seizures, and different breathing problems. My sleep study was also videotaped so they could see if how much I moved or if I talked or walked in my sleep. Alot of info can come from a sleep study. Hope yours goes well when you have it done.

[Guest guest]

hanna

I am so sorry for your frustration. No one deserves to go through all that

you have gone through.

I would like to mention to you and others that getting a good lactic acid

level is very difficult. Some lab techs say that putting on an elastic band

is okay and others say it isn't. I have always made them do it without. Then

we never know how it is then processed.

A sleep study can tell things other than sleep apnea. It can find nocturnal

seizures, restless leg syndrome, low oxygen levels, how long it takes to get

to sleep sleeping cardiac issues. There are others, but it depends on what

kind of sleep study has been ordered.

laurie

>

> Reply-To:

> Date: Mon, 16 Feb 2004 22:41:14 -0000

> To:

> Subject: Doctor Appointment Today

>

> 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.

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

> ----------------------------------------------------------------------------

>

>

[Guest guest]

that getting a good lactic acid

> level is very difficult. Some lab techs say that putting on an

elastic band

> is okay and others say it isn't. I have always made them do it

without.

Laurie...

And sometimes they put the elastic band on to get the stick, then

take it off to draw the blood. Others don't use the band at all.

(Do you let them use the band before they draw?)

Maggie

[Guest guest]

Maggie

I don't let them use the band at all. I am not hard to stick, so they don't

ever have trouble with it, but they don't like to do it that way. The get in

a routine and don't like to have to change. They do arterial sticks without

and the arteries are much deeper, so I can't see the problem. I have to go

for blood gases so they will get a chance to practice the arterial stick.

laurie

>

> Reply-To:

> Date: Mon, 16 Feb 2004 23:32:30 -0000

> To:

> Subject: Re: Doctor Appointment Today

>

> that getting a good lactic acid

>> level is very difficult. Some lab techs say that putting on an

> elastic band

>> is okay and others say it isn't. I have always made them do it

> without.

>

> Laurie...

> And sometimes they put the elastic band on to get the stick, then

> take it off to draw the blood. Others don't use the band at all.

> (Do you let them use the band before they draw?)

>

> Maggie

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

> ----------------------------------------------------------------------------

>

>

[Guest guest]

Hannah,

i am so happy for you,

what a great doc you found.

Ok that happy for you sounds weird, but you know what I mean...happy you got a diagnosis...

[Guest guest]

Hannah,

I am glad that you had such a good doctor appointment and found a good doctor. That is so important and such a wonderful feeling, like a weight off of our chests when we find doctors who believe us! You mentioned the sleep study. I had one last night and it wasn't bad at all. I already use a bi-pap machine, but they were checking for the myoclonus at night, because it has been getting worse. I did sleep most of the night and having the electrodes on my head and legs didn't bother me too much. I was very tired though. Of course, I didn't have the episodes of the muscle jerks I usually do (that is because I was having a test for those symptoms). They were also checking my REM sleep, which I didn't go into until about 4:00 AM. So, they do check a lot of things and it is painless. Good luck and I will be thinking of you.

Smiles,a

[Guest guest]

Dr. Tsao may have meant that the accummulations of mitochondria are seen

in mito patients, but that that in of itself doesn't mean that you have

mito. Does that make sense?

hanna5918 wrote:

>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.

>

>

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>