mito diagnosis and treatment

[Guest guest]

Steve

It took me 15 years for a diagnosis and MDA is the one who helped me

get there and my doc has learned almost as much as the " mito docs " . I

guess my experience has been different than many on this list. I do

remember the frustration of being referred from one doc to another and

never being believed.

laurie

> Laurie

>

> I do appreciate your point that the MDA booklet is only introductory.

>

> However, you say " If it listed all the specifics, then knowledgeable

> doctor's opinion would not be needed and there would be people demanding

> testing and taking the large doses of supplements without having anything

> near a diagnosis " . In my humble opinion: (a) there appear to be

> approximately 12 doctors in the world that are sufficiently knowledgeable

> to

> not need any REAL primer and ( all the REST of the doctors NEED (whether

> they will admit it or not) concise but thorough guidance, from a booklet

> and/or a knowledgeable patient.

>

> While it's true that some people will take large-dose supplements based on

> misguided self-diagnosis, it's also true that many of us in this email

> group

> have experienced vastly delayed diagnosis, in many cases due to clueless

> but

> self-inflated doctors, rude or incompetent staff, and overly frugal HMOs.

> This means that many of us have no choice but to be heavily involved in the

> whole process of diagnosis and treatment, and each of us must find their

> common-sense way through a forbidding terrain of confusion and obfuscation.

> I for one am very happy to understand that we are only sharing information,

> some of it very hard-earned, and that some of us are more qualified and

> careful than others.

>

> So I guess I've heard too many stories (including my own) where even the

> MDA

> clinics are woefully ill-informed about mito (one of their 40-odd

> diseases),

> and at the same time I am VERY impressed by the depth of information

> available to anyone who wants to look, on the UMDF site. MDA is well-known

> and has much more funding for patient needs, but is a little lame (in the

> specifics on mito) in their online info and even at times in clinical

> treatment. UMDF is a super resource, but I guess they're mostly into

> awareness

> and research. At least they're not afraid to publish their thorough

> information

> on diagnostics and treatment regimes (naming supplements and typical dosage

> ranges).

>

> I say all the above only in the spirit of my respectfully adding to the

> debate. I do also understand that at least some people have had successful

> treatment from MDA.

>

> Back to the original thread about details of diagnostic and ongoing

> testing,

> esp.

> re CoQ10 and carnitine,

> http://www.umdf.org/physicianarea/evaluation.html is fantastic on this

> subject.

> There's also great info at

> http://www.umdf.org/resources/index.asp ,

> http://www.umdf.org | Information Center | For Patients and Families |

> Diagnostic Testing, and

> http://www.umdf.org | Information Center | For Patients and Families |

> Treatment

>

> Regards

> Steve

>

> > Date: Sat, 21 May 2005 06:50:03 -0500

> >

> > Subject: Re: Re: Q10 and Carnitine blood tests

> >

> > Steve

> >

> > You might want to call MDA and make this suggestion or at an MDA

> > clinic. If enough of us were to make the request, then maybe they

> > would consider it. I agree that something with adults in mind is

> > needed as many doctors we see think of it as affecting children only.

> >

> > I think the reason tests and amounts of supplements aren't given is

> > that this is an information booklet only. If it listed all the

> > specifics, then knowledgeable doctor's opinion would not be needed and

> > there would be people demanding testing and taking the large doses of

> > supplements without having anything near a diagnosis. Just my opinion.

> >

> > By the way, I use the booklet " Think Mito " put out by the UMDF to hand

> > out to doctors. It has an article on adults with mito and does get

> > into more specifics in some of the other articles. It does cost $3.00,

> > but I have found it to be very worth the money in helping the many

> > specialsits I see for the problems that many of us have as a result of

> > mito.

> >

> > laurie

> >

> >

> > > I've just re-examined the MDA booklet on mito. BTW even though the MDA

> site

> > > has online ordering of their various booklets, they ask that you limit

> > > yourselves to one of each. I called their publications phone munber

> about

> > > this, explained that I hand these out now and then, and the nice lady

> > > immediately sent me a free supply of about 30.

> > >

> > > Under " treatment " , the MDA mito booklet first talks generally of some

> > > symptoms like stroke, seizures, etc. and says there are " highly

> effective

> > > treatments (including medications, dietary modifications, and lifestyle

> > > changes) " but then adds VERY little detail. They do cite creatine,

> > > carnitine, and coQ10, but ony as supplements. Later on, they mention

> DCA

> > > for

> > > lactic acidosis.

> > >

> > > Under " diagnosis " , the MDA mito booklet starts with physical

> examination.

> > > In

> > > their la-la world, a physician would then supposedly note multiple

> symptoms

> > > that " strongly point " to mito, order tests of stength and endurance,

> put

> > > two and two together and next order a muscle biopsy (looking for

> RRF)!!!

> > > Other choices at this point would be MRS tuned for phosphocreatine and

> ATP,

> > > and CT and MRI to visualize muscle structure. There is of course no

> mention

> > > of the likely coertion that will be needed before doctors actually

> order

> > > these expensive tests. Then finally the booklet cites blood tests, but

> they

> > > only list lactate/pyruvate (with no mention of incorporating exercise)

> and

> > > CK. Finally they cite genetic tests looking for mutations in blood and

> > > muscle.

> > >

> > > That's it. It's perhaps unfair to characterize this introductory

> booklet

> as

> > > lame. But I certainly wouldn't consider it any kind of resource or

> guidance

> > > for doctors ordering tests.

> > >

> > > Steve D.

> > >

> > > P.S. I know that many children get mito, but I sure wish there was a

> > > version

> > > of this booklet that didn't HEAVILY picture kids. An adult version

> would

> > > GREATLY improve my credibility when I hand out this booklet.

> > >

> > > > Date: Fri, 20 May 2005 04:26:49 -0000

> > > >

> > > > Subject: Re: Q10 and Carnitine blood tests

> > > >

> > > > I'm not sure what's written in the MDA booklet, but I know how

> > > > difficult it was for me to get the local lab to co-operate to order

> > > > my CoQ10 test. What a project for something that just shouldn't

> > > > have been that difficult. (I had been told by my metabolic doc's

> > > > office that I could have the blood drawn locally and the local lab

> > > > just needed to call the actual testing lab for instructions.)

> > > >

> > > > My local doc offered to have her office draw the blood and send it

> > > > to the metabolic clinic (the nurse later refused and told me the DOC

> > > > isn't the one who actually draws the blood and she didn't care what

> > > > I was promised, I needed to go to someplace like Quest Labs). I did

> > > > just that and unfortunately I was recognized by one of the employees

> > > > as I had been there before with unsual lab requests. She

> > > > immediately told me that they were too busy to be doing anything out

> > > > of the ordinary (they had three people in the waiting room).

> > > >

> > > > I kindly insisted they COULD do this and I wasn't in a hurry. I'd go

> > > > away and come back when they had the time to make the phone call.

> > > > The next day I got a call that they had figured it out. They

> > > > actually sent the blood to a different lab than what I told them (no

> > > > idea how that could have happened and why they didn't just call the

> > > > phone number I GAVE them) but it leaves me wondering how other

> > > > people manage. I assume it's a lot easier when you have everything

> > > > done through an MDA clinic. Or when you're AT the actual facility

> > > > where they run the tests.

> > > >

> > > > Maggie

> > > >

> > > >

> > > >

> > > > > > Thanks for the replies. I was at my blood lab yesterday for

> > > > > another

> > > > > > test, and asked about getting tested there. The guy had no idea

> > > > > what I

> > > > > > was talking about. Fortunately, or maybe unfortunately, I'm

> > > > > getting

> > > > > > kind of used to that sort of response.

> > > > > >

> > > > > > I made an appointment at my local MDA clinic. They should know

> > > > > what to

> > > > > > do.

> > > > > >

> > > > > > There is info at Epic about Q10 blood levels.

> > > > > >

> > > > > > B

>

>

>

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>

[Guest guest]

Laurie

Fair enough, and I'm happy for you or anyone when they eventually do get a

good diagnosis. I guess I'll go ahead then and respectfully ask the $64,000

question: in all those 15 years, did YOU ever suspect a mito or other

diagnosis and especially, did you therefore ever take a supplement ON YOUR

OWN?

'Cause I sure did, and continue to do so, and I will until some

" knowledgeable doctor " pries my CoQ10 and acetyl-L-carnitine bottles from my

(hopefully not dying) hands " . :-)

Point well taken, about finding a doc willing to learn about mito. Whether

they are researching on their own, or reading my handouts, I am slowly but

surely working on my own circle of docs.

And by the way, whether the MDA publishes guidelines for supplements and

dosage ranges, nonetheless the drug companies, supplement sales websites,

and so-called independent " health " websites, will all be doing their best to

convince many to self-medicate (YES IT'S TRUE, the government doesn't want

us to know about this new OTC that MELTS AWAY FAT for those who are too busy

to exercise!!! ). We each must strive to be as discerning and careful about

all these claims as we can. I only wish the FDA would regulate the actual

CONTENTS of these supplements, so that they at least contain what they claim

to contain. And maybe they could better police at least some of the more

outlandish or unsafe claims (a la ephedra), but perhaps that's expecting too

much.

Steve

> Date: Sun, 22 May 2005 22:19:20 -0500

>

> Subject: mito diagnosis and treatment

>

> Steve

>

> It took me 15 years for a diagnosis and MDA is the one who helped me

> get there and my doc has learned almost as much as the " mito docs " . I

> guess my experience has been different than many on this list. I do

> remember the frustration of being referred from one doc to another and

> never being believed.

>

> laurie

>

>

> > Laurie

> >

> > I do appreciate your point that the MDA booklet is only introductory.

> >

> > However, you say " If it listed all the specifics, then knowledgeable

> > doctor's opinion would not be needed and there would be people demanding

> > testing and taking the large doses of supplements without having

anything

> > near a diagnosis " . In my humble opinion: (a) there appear to be

> > approximately 12 doctors in the world that are sufficiently

knowledgeable

> > to

> > not need any REAL primer and ( all the REST of the doctors NEED

(whether

> > they will admit it or not) concise but thorough guidance, from a booklet

> > and/or a knowledgeable patient.

> >

> > While it's true that some people will take large-dose supplements based

on

> > misguided self-diagnosis, it's also true that many of us in this email

> > group

> > have experienced vastly delayed diagnosis, in many cases due to clueless

> > but

> > self-inflated doctors, rude or incompetent staff, and overly frugal

HMOs.

> > This means that many of us have no choice but to be heavily involved in

the

> > whole process of diagnosis and treatment, and each of us must find their

> > common-sense way through a forbidding terrain of confusion and

obfuscation.

> > I for one am very happy to understand that we are only sharing

information,

> > some of it very hard-earned, and that some of us are more qualified and

> > careful than others.

> >

> > So I guess I've heard too many stories (including my own) where even the

> > MDA

> > clinics are woefully ill-informed about mito (one of their 40-odd

> > diseases),

> > and at the same time I am VERY impressed by the depth of information

> > available to anyone who wants to look, on the UMDF site. MDA is

well-known

> > and has much more funding for patient needs, but is a little lame (in

the

> > specifics on mito) in their online info and even at times in clinical

> > treatment. UMDF is a super resource, but I guess they're mostly into

> > awareness

> > and research. At least they're not afraid to publish their thorough

> > information

> > on diagnostics and treatment regimes (naming supplements and typical

dosage

> > ranges).

> >

> > I say all the above only in the spirit of my respectfully adding to the

> > debate. I do also understand that at least some people have had

successful

> > treatment from MDA.

> >

> > Back to the original thread about details of diagnostic and ongoing

> > testing,

> > esp.

> > re CoQ10 and carnitine,

> > http://www.umdf.org/physicianarea/evaluation.html is fantastic on this

> > subject.

> > There's also great info at

> > http://www.umdf.org/resources/index.asp ,

> > http://www.umdf.org | Information Center | For Patients and Families |

> > Diagnostic Testing, and

> > http://www.umdf.org | Information Center | For Patients and Families |

> > Treatment

> >

> > Regards

> > Steve