Re: Variation of mito diseases - a note to new mitoldies

[Guest guest]

Well said.

I know that with the MELAS even in our family, my sister was diagnosed first.

My mother probably died from a seizure from it, I have i it and my 13 yr old son

has it.

We had and have some of the same symptoms but also many different symptoms and

react to meds in the same but also diffent ways. For example the anthisthamine

Actifed puts my son to sleep with just 1 tablet. I take 1, it helps but the

effects wear off like 2 hours later when they are supposed to work for 4-6 hrs.

Janet Sample

Variation of mito diseases - a note to new

Many of us on this list share symptoms, but note that mitochondrial

diseases are a whole set of different diseases. Those with detected

specific defects, either in one of the five mitochondrial complexes

or a related enzyme, may see more similarity in symptoms and which

treatments work, but " your mileage may vary " is very true about this

set of illnesses. A part of the mito cocktail that works for me

might not work for you, and vice versa - there currently is not

enough research to match the exact treatment to the patient, it is

hit or miss.

Even people who have a MELAS dx, sharing the symptoms of

mitochondrial encephalopathy (effects on brain function), lactic

acidosis, and stroke-like episodes, can have different courses and

severity of symptoms.

This is one reason it is tough for doctors to figure us out - someone

who has seen a few mito disease patients may have a prejudicial view

of what works, what doesn't, and what the prognosis is. Many of us

gravitate towards doctors who have seen hundreds of mito disease

patients (including many adults), and are following up tens of

patients. I think that's the only way to get some assurance of mito

disease expertise - exposure of doctors to multiple mito disease

cases, and/or working with one of the few mito experts in the world.

Local care is necessary, but defining the illness as much as possible

by an expert was indispensable for me.

Another example of this confusion is whether the mito disease is due

to a nuclear DNA (nDNA) or mitochondrial DNA (mtDNA) genetic defect.

In my case, I am thought to have a nDNA defect, one reason because my

kids do not seem to be severely affected (a mtDNA problem (for a

woman) is more likely to cause problems in one's children). All of

these details are things you will find out if you pursue one of the

expert mito doctors, even if it means travel and inconvenience.

All IMHO, I'm not a medical doctor, but my dealings with mito have

been helped greatly by this list and traveling 500 and 1,000 miles to

see expert mito doctors.

Take care,

RH

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