MITO QUESTION

[Guest guest]

Dear Sheri,

Congratulations on finding an Metabolic center! This is good place to

start. Another source is the Muscular Dystophy Association for information

because mito comes under the MDA Umbrella.

As for your records I would just take what you have and let the docs sort it

out. It would be helpful for you to take a medical history so that the

doctor can have an overall view. The tests you are having done are a start

- I have lactic acidosis and high uric acid (gout!) myself which together

with my history made me eligable to have the muscle biopsy at Cleveland Clinic.

Tests that were ordered for me at the clinic were: blood and urine amino

acids, organic acids, blood and urine acylcarnitine profiles, antinuclear

and anticardiolipin antibodies ( I had been dx'ed with autoimmune disease),

CK ( not sure what this is). hyercoagulation profile, free T4 and TSH, Uric

and lactic acid (which can change over time). In addition, I had a skin

biopsy for electron microcsoscopy and fiboblast culture and an MRS scan.

The blood and urine studies are probably same ones used at your center. And

a CFIDS doc could also order them I would think. I had to go out of town

for mine though.

At this point a mito dx *may* appear, but if not that doesn't rule out

disorder. A needle biopsy frozen biopsy can yield information as presence of

ragged red or blue fibers, electron microscopy, mito DNA studies, electron

transport chain enzyme activity. This is a simpler proceedure and might

render a dx, but it is limited in its information. Also, when muscle is

frozen it harms the mitochrondria.

The only definative test is a *fresh* muscle biopsy in which much more

information is revealed which would affect treatment.

When I told the CC doctor that I had had CFS diagnosis he simply shook his

head. A RHEUM at clinic dx'ed CFS *discounting* a myrid of signs and

symptoms as well as my whole history, but he was very wedded to CFS dx., and

also missing proper dx'es in others. With Mito literate MD, I felt I was in

the right hands because I was being taken seriously and moving forward. I

would include any labs and again a medical history, and just say that CFS

was one of your diagnoses, but you are not better, etc, etc, and wish to

persue diagnois process further. I would hope that CFS wouldn't be

considered as this can be an ambiguous diagnosis for a disease process with

many causes.

Have MCS, autoimmune disease, cardiac abnormalities, tick borne or other

infections been ruled out? Autoimmunity & cardiac disorders can appear at

anytime in anyone, and need to be monitered.

I didn't have to give tests as you have been asked to do and it seems IMHO

that is *their* job. Has a doctor suggested mitos to you and/or are you

wanting to rule it out? I wanted to rule it out and had *no* problem is

asking this - especially with hard signs of abnormalities that shouldn't be

happening at my age. It seems that you have a right to an evaluation as no

other answers have appeared - if I understand you correctly.

Of course another disorder could - or could not - be found, so please don't

worry about having a mito problem at this point. I got upset as I did

*not* want this, but it is better to know and get treatment. Basically tx

is similiar to some things as CFS people use. A basic mito cocktail

consists of large doses of C0-10, B vitimins, alpha lipoic acid, carnitine

if necessary and other things individual to the patient. Changes in diet

also may be necessary. I have to take larger doses of folic acid as

homocysteine is high which can caused by metabolic problem (make SURE this

is done!) but I don't know how CC will treat me otherwise yet.

Before your tests, you need to be off above supplements and any HRT as these

can scew results. For muscle biopsy, 1-2 monthes off is necessary.

Whatever happens at the clinic or with CFS doctor, please use all these

resources for help. As I said, the CFS doc may order tests that the

metabolic clinic won't at this time. My workup was so complete because I

went to Cleveland. There is no where else in country where a fresh muscle

biopsy on adults may be obtained as far as I know at this time, although the

UofCA at SanDiago is a possiblity and is doing studies on med for lactic

acidosis. Massachusetts General in Bosten, and Hopkins are also doing

work in Mito area.

To *really* get updated info about signs, treatment,finding doctors from

knowlegable people who have been dx'ed , I would suggest

reading/participating in a Mito list for adults on egoups. Members are

patients at CC, as well as elsewhere, and some are going through the

diagnostic maze. There are a couple of mito lists on egroups, but they

are mostly for parents with children with Mito. Mitoldies, which is anyone

over 18 ;-), is where I learn the most and is specifically for adults.

Membership is by invitation and was set up this way in order to control

flamming and such. If you want to get on this list (which I highly

recommend!), I would be happy to forward your address to their listowners.

One of the owners was on this list this spring, giving lots of detailed

information which led at least 2 of us to a diagnosis - mine probable and

the other definative.The other person has left this list and is on mitoldies

now.

I wish you luck with everything and please do *not* give up in finding

answers! Mito in adults is relatively new in medical circles and not too

many docs are too aware of it so don't let unknowledgable docs get you down.

It is associated now with Parkinsons, alzheimers, but affects the muscles,

heart, and brain the most. Please write to me privately anytime.

Take care,

Christie

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From: rspc1@...

>Hi Christie,

>>I found a Mitochondrial and Metabolic Clinic in my area, but I

>have to submit records indicating possible cause to suspect a

>mito d/o prior to acceptance in the clinic for testing.

>

>I've done some research and found a long list of recommended

>tests at a Mito site. But which to have done? My doc was only

>willing to order a blood test for lactic acid, bicarb and uric acid

>which I'm having run at a standard lab tomorrow. Any other

>suggestions? I see a CFIDS specialist in early December and

>may be able to have more blood work ordered.

>

> I was thinking not to include any information in my health

>records/application to the Mito Center that has the

>CFS/CFIDS/ME words in them. Do you agree it's better to avoid

>that dx in Mito circles?

>>Any help would be greatly appreciated.

>>Best thoughts, Sheri

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