what else besides complex I

[Guest guest]

Laurie,

This is me getting back to you from a week ago, I have been

sleeping a great deal; everyone in the house ahs been sick and I

find myself behind in most things.

The report said mild proximal renal tubule dysfunction increased

plasma alanine and glycine; increased lactate and pyruvate in the

muscle and splinal fluid as well as increased alanine and glycine in

the spinal fluid...mild increases in longer chain fatty acids. Does

any of this sound familiar. I still have not been able to connect

with my neuro to go over this.

The report recommends cardiology follow up...which I already do. A

yearly electroretinogram (ERG) for my eyes...(has anyone heard of

this and what would they be looking for?

Hearing tests and urine test for organic acids and amino acids.

A ergometry for calculation of anaerobic threshold(?)

And endrocrinology follow up.

Thanks for your help in figuring this out. I'm trying to discern if

I'm glad that it is this rather than the MS...an odd position to be

in.

Thanks,

Vivian

> > > > I received my report from Shofner...it says mitochondrial

> > > > encephalomyopathy; complex I defect.

> > > >

> > > > I feel like I'm more lost than before...what does a

complex I

> > indicate?

> > > > I know what the mito enephalomopahty means...(brain

> > lessions)...but

> > > > can anyone help me understand or where to go to understand

the

> > > > implications of a complex I for me and for my family?

> > > >

> > > > Thanks,

> > > >

> > > > Vivian

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > 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]

Vivian

You might want to see a nephologist (kidney doc) to get a baseline for

the renal tubule dysfunction. This means you are probably spilling

some things that are important to heart and muscle function. I only

see mine once a year or if I am having problems. He checked a 24 hour

urine and blood to see what I was spilling. I just have to replace

what I am loosing and get blood levels when my pain and cramping get

bad.

I also have high alanine which is a mito marker. I have not had a

spinal tap, so can't help you there. The high lactate and pyruvate are

also found in mito.

Barbara can probably help you with what things to stay away from in

diet, to lower your long chain fatty acids.

The specialists are to catch problems early and treat them. I can't

remember what the eye test is looking for. I have had it, but can't

remember.

For me, MS or mito would probably be a toss-up. I guess I feel in

control with mito, knowing I can do things like sleeping, using

wheelchair outside the house, etc. to manage my simptoms.

laurie

> Laurie,

>

> This is me getting back to you from a week ago, I have been

> sleeping a great deal; everyone in the house ahs been sick and I

> find myself behind in most things.

>

> The report said mild proximal renal tubule dysfunction increased

> plasma alanine and glycine; increased lactate and pyruvate in the

> muscle and splinal fluid as well as increased alanine and glycine in

> the spinal fluid...mild increases in longer chain fatty acids. Does

> any of this sound familiar. I still have not been able to connect

> with my neuro to go over this.

>

> The report recommends cardiology follow up...which I already do. A

> yearly electroretinogram (ERG) for my eyes...(has anyone heard of

> this and what would they be looking for?

>

> Hearing tests and urine test for organic acids and amino acids.

>

> A ergometry for calculation of anaerobic threshold(?)

>

> And endrocrinology follow up.

>

> Thanks for your help in figuring this out. I'm trying to discern if

> I'm glad that it is this rather than the MS...an odd position to be

> in.

>

> Thanks,

> Vivian

>

>

> > > > > I received my report from Shofner...it says mitochondrial

> > > > > encephalomyopathy; complex I defect.

> > > > >

> > > > > I feel like I'm more lost than before...what does a

> complex I

> > > indicate?

> > > > > I know what the mito enephalomopahty means...(brain

> > > lessions)...but

> > > > > can anyone help me understand or where to go to understand

> the

> > > > > implications of a complex I for me and for my family?

> > > > >

> > > > > Thanks,

> > > > >

> > > > > Vivian

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > 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]

Hi Vivian,

It is fairly common in respiratory chain defects to have secondary

impairment of long chain fatty acids (LCFA). In a primary disorders of LCFA,

a low-fat diet is recommended--generally less than 40 g of fat per day. I

keep mine under 30 g a day. However, I'm not sure if the experts have come

to any consensus on diet when the LCFA impairment is secondary. It seems

logical that it might help to limit fat intake, but I also know there are

some people with complex I deficiency who do better with an Atkins type

diet, which is pretty high in fat. Probably best to check with some of your

doctors or perhaps get a referral to a dietician who is knowledgeable about

metabolic disorders---though the latter can be hard to come by.

Just a postscript on MS. Larry King had a show Friday night on that subject.

It was a guest hosted by Meredith Vieira and included various celebrity

guests who have MS, including her husband Cohen (a television

producer) who has had MS for 30-some years, along with a Dr. Schapiro from

Minneapolis who was just delightful--the old-fashioned, up-to-date kind of

doctor everyone wants to have. The consensus seemed to be that there is a

lot of hope now for people with certain forms of MS---five new drugs that

are quite effective in the early stages.

Barbara

> Vivian

>

> You might want to see a nephologist (kidney doc) to get a baseline for

> the renal tubule dysfunction. This means you are probably spilling

> some things that are important to heart and muscle function. I only

> see mine once a year or if I am having problems. He checked a 24 hour

> urine and blood to see what I was spilling. I just have to replace

> what I am loosing and get blood levels when my pain and cramping get

> bad.

>

> I also have high alanine which is a mito marker. I have not had a

> spinal tap, so can't help you there. The high lactate and pyruvate are

> also found in mito.

>

> Barbara can probably help you with what things to stay away from in

> diet, to lower your long chain fatty acids.

>

> The specialists are to catch problems early and treat them. I can't

> remember what the eye test is looking for. I have had it, but can't

> remember.

>

> For me, MS or mito would probably be a toss-up. I guess I feel in

> control with mito, knowing I can do things like sleeping, using

> wheelchair outside the house, etc. to manage my simptoms.

>

> laurie