Re: Newbie-TESTING & Carnitor

[Guest guest]

,

Sorry about Lily, but she is already helping you and her siblings.

When my mother died, my one aunt strongly suggested an autopsy because her

father had died of a seizure I think. Well, the autopsy did not conclude

anything and now we know it was more than likely MELAS, maternally inherited.

My grandmother lived to 95 though. When my sister had her seizures and comas it

was like dejavu--they both had been the same build and both were like 87 lbs

now. But if it had not been for my sisters new friend who is a physician, we

never would have known about MELAS.

Because of the knowing my 12 yr old son takes the Carniqgel, helping and

explaining his dysmobility problems and when he has to sleep for 18-20 hrs a

day sometimes. I know why my blood sugar goes up with exercise rather than down

like normal diabetics and know why I get so fatiqued sometimes.

Both my son and I have had carnitor and Q10 testing done but I actually cannot

tell you the results. They are in our files down at the docs office in

Milwaukee. I do have copies of my lactic acid and my sons tests. I have had my

lactic acid tested locally here also. My son was actually tested for lactic

acid back in 1997 at the same time I was. His test results were just put in my

file. The doc suggested him getting tested.

Basically I take the Carnitor because the doc prescribed it and I feel better

taking it. I take the liquid though as could not handle the big pills. I

actually do not take the prescribed amount of 1000 mg 4 times a day though--I am

not very good about taking the Qgel either although I harp on my son to take

his.

But, for instance last week I was very tired, my legs hurt alot, and I was

starting to have bad constipation. I took a couple of teaspoons of the

carnitor, about 6 of the 30 mg qgel, did this twice on Friday. Now my legs feel

better and my constipatation is gone.

As far as the testing--the doc did mention about the insurance issue. I have

and had life insurance. My son has life insurance thru the military insurance

plan we have. Though, it would be good to get one of those that cannot be

refused.

My sons test results are not actually in his name--they are in my file and I

have a copy. We paid for the test ourselves. It cost $500 because we knew the

mutation to look for. His are in his first and middle name only. We basically

needed the test results for the school although I do not know what they would

have done if it came back inconclusive.

Do you have a physician who will prescribe the Carnitor for you without an

official diagnosis? Qgel , Carniqgel and the Carnitine capsules epic4health.com

sells do not need a prescrption. In fact, it is very hard to get them paid for.

The carnitine that epic4health.com sells is supposed to come from Sigma Tau--the

makers of Carnitor.

Janet

Re: Newbie-TESTING

Janet,

It sounds as if Mito has hit your family hard! I am sorry for that,

and sorry for your loss.

I am taking a good but over the counter carnitine not Carnitor.You

mention that you take Carnitor- does that mean you have had testing

done? I am just starting to scratch the surface of that idea and all

that it means.When our youngest daughter died the attending ER

physician but mitochondrial disorder down as her cause of death. I

fought that hard as none of our tests were conclusive. I also

objected to the potential impact that could have on her siblings in

the future as Death Certificates are public record. I argued that he

would be denying them the ability to get medical insurance and/or

life insurance in the future. Maybe an over statement but I don't

think so. He did agree with me and changed the cause of death to

seizure disorder which was more appropriate.

So that's another question if all of you would be kind enough to

answer. Prior to testing did everyone have all of insurance that you

wanted? Does the testing being done impact one's coverage even if the

tests were negative.

The testing issue is also complicated in our family by the two other

kids ( life ins for them?) and the bad taste of our youngest

daughter. I allowed EVERY test possible to be done on her and my

husband feels as if it was all for naught! All those needles (Oh how

she screamed!) and it didn't do a lick of good! She still died. In

his mind. I believed and still do that anything no matter how small

they learned from her would help the next kid and maybe help them

from living the life that Lily did.

I should go make breakfast for some wee ones- more later.

Thanks for being here.