response to complex I diagnosis

[Guest guest]

Laurie,

Thank you for asking how I am doing regarding the results. Oddly, I

am reacting differently than I expected. I expected to be relieved;

five years of a Multiple sclerosis diagnosis that did not act or

respond as the doctors expected...I thought I would be relieved...but

Dr. Shofner recommended 500 mg of COq10 a day...(can that be right?)

We are having a difficult time paying for it as it is now. And I

don't know what the implications are for the children.

I don't know what the implications are for me either. Their was

something in the report about renal something or other...of course I

already know about the " brain stuff " and the cardiomyopathy.

My son who has had some seizure activity...I'm not sure what this

means for him or my other son, that Cohen had wanted to biopsy a

couple of years ago.

Dr. Shoffener had said that we could come back and talk with him

about the results...but his assistant said there is no more room for

this year...and that makes it more difficult because it starts

another year with the insurance payments, deductables and all that.

The site that referenced was and is helpful...and your plain

english about complex 1 helps.

Does this mean that when my son goes to the hospital or I do, that I

no longer will get those glazed over looks...if I can say it is

mitochondrial complex 1?

Thanks for being there.

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

Don't count on any change in the glazed looks, but at least now you

can give them info on mito and a copy of your diagnosis which should

help.

Is the kidney thing " renal tubular dysfunction or acidosis " ? It might

also include distal or proximal. I have proximal renal tubular

dysfunction. My kidneys release calcium, potassium, phosphorus and

magnesium into my urine instead of hanging on to it to return to the

blood stream.

I take 1000 mg of CoQ, so 500 mg is probably what Dr. Shoffner meant.

It is felt by my MDA neuro that taking a smaller amount might be

helpful as an antioxident, but not for mito (his opinion). He said it

was like flushing it down the toilet.

I think I know your concern for your children. I still have those

concerns for my sons who are grown.

Give yourself a chance to process this news. I think that I felt a

great deal or relief, lots of new questions and sorrow. Knowing that I

had something for sure gave me some control, but I also had to grieve

for the loss of my health (for real). We all react differently, so let

yourself feel as you need to. We are here to support you.

Hugs,

laurie

>

> Laurie,

>

> Thank you for asking how I am doing regarding the results. Oddly, I

> am reacting differently than I expected. I expected to be relieved;

> five years of a Multiple sclerosis diagnosis that did not act or

> respond as the doctors expected...I thought I would be relieved...but

>

> Dr. Shofner recommended 500 mg of COq10 a day...(can that be right?)

> We are having a difficult time paying for it as it is now. And I

> don't know what the implications are for the children.

>

> I don't know what the implications are for me either. Their was

> something in the report about renal something or other...of course I

> already know about the " brain stuff " and the cardiomyopathy.

>

> My son who has had some seizure activity...I'm not sure what this

> means for him or my other son, that Cohen had wanted to biopsy a

> couple of years ago.

>

> Dr. Shoffener had said that we could come back and talk with him

> about the results...but his assistant said there is no more room for

> this year...and that makes it more difficult because it starts

> another year with the insurance payments, deductables and all that.

>

> The site that referenced was and is helpful...and your plain

> english about complex 1 helps.

>

> Does this mean that when my son goes to the hospital or I do, that I

> no longer will get those glazed over looks...if I can say it is

> mitochondrial complex 1?

>

> Thanks for being there.

>

> 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]

--- schumachervivian schumachervivian@...>

wrote:

> Does this mean that when my son goes to the hospital

> or I do, that I

> no longer will get those glazed over looks...if I

> can say it is

> mitochondrial complex 1?

Vivian,

I wish it did but the reality is that docs don't know

about it at all. A resident where I used to work asked

me about my kids. I said that they had suspected mito.

He said, " Oh, you mean that rare thing found in babies

and they die. "

My son and I both take CoQ10 200mg @X/day.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

> Sorry if I got off track, but I think if one says " I have diabetes "

> or some other " known " illness, life is a lot easier when dealing with

> medical professionals, family, and friends. Maybe we should carry

> around the encyclopedia of rare diseases LOL.

>

> Take care,

> RH

Ditto. I've always said that if I had to be sick I'd rather have some

common, garden-variety thing that has name recognition. Unfortunately,

having a rare disorder adds another set of problems in addition to being

sick.

Barbara

[Guest guest]

RH

I take the Q-gel, but take 960 mg. per day. I have noticed improvement

at that level and that is what I was prescribed of the Q-gel.

laurie

> Concerning the amount of CoQ10, I was told to take 1/3 of the

> prescribed amount of the Tishcon QGel or liquid would be equivalent.

> Other brands you would need to take the full amount. So I was

> prescribed 180 mg/day, and I was taking 60 mg/day of the QGel, with

> my doctor's okay and understanding that that is equivalent.

>

> Take care,

> RH

>

>

> > > > > 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]

I was told by my neuro, who's pretty knowledgeable about mito

although not a " world-class mito expert " , that I was to start on 180

mg/day of " any old " CoQ10, and that it was equivalent to 60 mg/day of

QGel. She was intending to increase my dosage to around 1,000 mg/day

(333 mg/day of QGel), but I had severe side effects (complete lack of

sleep, even when QGel was taken before noon) from only 60 mg/day of

QGel.

I was thought to have a " light case " of mitochondrial disease, that

is until my fresh muscle biopsy showed a complete lack of activity

for Complex I. I don't know off-hand what the recommendation would

be for me if I could tolerate CoQ10, now that the Complex I defect is

defined.

I have a question - do you take the QGel without Vitamin E, or with?

I thought it odd when I was purchasing QGel for the first time (I

actually first tried the capsules, then the liquid, thinking I could

have reacted to different fillers), the amount of Vitamin E per

capsule or teaspoon seemed inconsistent, when looking at amount of

CoQ10 versus amount of Vitamin E.

Take care,

RH

> > > > > > 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, MEDICAUD OF INSURANC EWILL PAY FOR Q-10 IF YOUR DOCTOR WILL

WRITE AN RX PERSCIRTION..GOOD LICK, CAROLE

[Guest guest]

hi. i receive prior auyhorization for q-tens in nh and mass on medicaid. i

wrote

the letter myself, stating that i have mito disease and need this med for

medical

necc-my doctor signed and we sent it off to medicaid and all was well. good

luck,

carole fyi- i called the state medicated offices and the nureses told me how

to write it.

[Guest guest]

hi, nh medicaid paid for the over the counter q 10. i called the state

medicaid office and

spoke to the nurse--she told me i would need a medicaly neccessary for my mito

disease and needed prior author. i could not afford to buy it. my case

worker was

very helful. i hope it works for you. good luck, carole my doctor wrote a

excellent

letter. carole

[Guest guest]

--- CARCul2001@... wrote:

> HI, MEDICAUD OF INSURANC EWILL PAY FOR Q-10 IF

> YOUR DOCTOR WILL

> WRITE AN RX PERSCIRTION..GOOD LICK, CAROLE

This is not necessarily true. It varies by state and

can vary within a state by medicaid waiver. For

example, medicaid is not paying for our Carnitor or

CoQ10. I'm out of my carnitor and my son's almost out.

It costs $91/box and we use six boxes a month.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________

Start your day with Yahoo! - Make it your home page!

http://www.yahoo.com/r/hs

[Guest guest]

Hi Carole

I'm a little confused by your two emails, as to who wrote the letter, but it

seems like YOU did based on NH input. Or perhaps your doctor added to it. In

any case, congratulations on getting this done!

Do you have this letter on your computer, and would you be willing to

copy-paste it into an email to this group? I believe that would be quite

helpful to us all. By the way, pasting directly into the email would be much

better. I use the email digest option and it deletes all attachments.

Is the doc who signed this a specialist in mito, or perhaps the one who

first gave you your diagnosis? I'm curious as to how willing a general

doctor would be, to signing such a letter, if their knowledge of mito is

very limited. I like to think my PCP might sign such a letter, but who knows

since it's quite a leap to be declaring something as medically necessary.

Although I guess a statement by the patient that they feel better (more

energy) from the OTC, at the same time presenting an appropriate article

printout, would go a long way. If he defers to my neurologist, then it could

be a very long and difficult process for me, to get that signature.

How I long for the doctor's ways of yesteryear. Anyone ever seen the Norman

Rockwell painting, of a doctor giving a little boy a shot in the butt, while

the boy is standing on a chair reading something on the wall? Sigh....I

can't recall when I've ever had a DOCTOR give me a shot, not counting my

childhood (in the 50s). Oh well, I guess that was also the time when nothing

at all was known about mitochondria.

Cheers

Steve D.

Date: Tue, 29 Nov 2005 04:21:28 EST

From: CARCul2001@...

Subject: Re: response to complex I diagnosis

hi. i receive prior auyhorization for q-tens in nh and mass on medicaid. i

wrote

the letter myself, stating that i have mito disease and need this med for

medical

necc-my doctor signed and we sent it off to medicaid and all was well. good

luck,

carole fyi- i called the state medicated offices and the nureses told me

how

to write it.

Date: Tue, 29 Nov 2005 04:25:22 EST

From: CARCul2001@...

Subject: Re: response to complex I diagnosis

hi, nh medicaid paid for the over the counter q 10. i called the state

medicaid office and

spoke to the nurse--she told me i would need a medicaly neccessary for my

mito

disease and needed prior author. i could not afford to buy it. my case

worker was

very helful. i hope it works for you. good luck, carole my doctor wrote a

excellent

letter. carole