Re: Adults with Seizures-

[Guest guest]

My Paternal Aunt who (as far as anyone knew) was in perect health. She went on

one of her normal bi-weekly jaunts by bus to downtown San Diego and my cousin

(who suffered from very bad undiagnosed tremors, even by Navy doctors) received

a call that she had walked into the bank, went to the floor and was a DOA, no

one ever knew why? There is a lot of thyroid problems, goiters, etc in my

Mother's side of the family as well as dementia and Mother had Alzheimers. Like

I have said previously my Dad suffered from tremors also as well as my Paternal

Grandfather his were so bad he could hardly get a cup to his mout without it

nearly spilling. My Dad suffered twp paralyzing strokes and was in kidney

failure and had been on

dialysis for 15 months before I lost him and my son also was in kidney

failure, but the doctors were not really sure if that was the causeof death but

there was no autopsy so they put kidney failure on his death certificate. He

kept this fact hidden from me as he knew I would push for dialysis and he and my

husband both said they would rather be dead than on dialysis like Daddy was.

Myself I'm a mess, doctors even hate to try to take my medical history (ha)?

Have a good day, Dolores

Janet Sample thesamples@...> wrote:Thanks Bug,

Now that we know about MELAS it is still a threat but hopefully by taking the

vitamin cocktail everyone will be better off.

For myself and my son we are on the " heavier " side, not 5 ft 105 lbs so our

problems are fewer although some evidence of seizures.

The diagnosis really has more bearing on my cousins--my aunts kids. My one aunt

died at 58 after fainting in church. Her daughter is my height and weight and

has similiar symptoms to me. My other aunt who is now 64 has 4 daughters who

have kids. 2 of my cousins and 2 of their kids are very, very skinny.

Have not seen them in awhile but a couple of years ago they were thinking of

getting tested.

Janet

[Guest guest]

I'm glad you can take the cocktail. I had way too many GI problems

from them. I've suspected at least one of my cousins has Mito because

she too is rail thin as you mentioned. That's how I was as a kid. I

was sick from birth, but docs didn't figure it out until I was in my

early 30's. I'm currently trim, but I after taking Prednisone for

years, my weight was up there. I gained 80 lbs. Thankfully, I've

lost 73 of it...from being sick, and also from maintaining a good diet

and exercise program. I actually suspect that most of the people in

my family have Mito, but as usual, they all have an excuse for their

symptoms and Mito isn't very palitable.

bug

[Guest guest]

There are many things on the mito cocktail list - have you tried all

of them? I take only one thing on the list, NADH, which is taken

sublingually so no GI issue. B12 is also on the list I have, that can

be taken as injections or sublingual.

I tried CoQ10 and Carnitor, and had severe side effects from both.

Maybe NADH or B12 might be worth a shot? YMMV, I'm not a medical

doctor, etc. I find that the NADH has helped me tremendously, in

addition to an Atkins-type diet...

Take care,

RH

> I'm glad you can take the cocktail. I had way too many GI problems

> from them. I've suspected at least one of my cousins has Mito

because

> she too is rail thin as you mentioned. That's how I was as a kid.

I

> was sick from birth, but docs didn't figure it out until I was in my

> early 30's. I'm currently trim, but I after taking Prednisone for

> years, my weight was up there. I gained 80 lbs. Thankfully, I've

> lost 73 of it...from being sick, and also from maintaining a good

diet

> and exercise program. I actually suspect that most of the people in

> my family have Mito, but as usual, they all have an excuse for their

> symptoms and Mito isn't very palitable.

>

> bug

[Guest guest]

Well, the Resident finally called back and said that he interprets my

EEG results to mean that I'm more likely to have seizures than the

average person, but that he isn't sure if I'm having them or not. He

says my symptoms don't correlate with the results, but I honestly

couldn't tell him the entire list of symptoms that could be related

because there are way too many. Some of which may be from my head

injury 7 years ago. Anyway, he said we should just " monitor " my

condition and that my symptoms sound like myoclonus. Basically he

blew me off...getting used to that by now. He thinks they should do

an EEG at the time of my symptoms when I'm having a crisis in the ER

(yeah, like the ER is going to give a rat's behind ! ). Ugh, I really

hate Residents ! This one replaced the last one that I saw, so he

doesn't know me at all. Half the info in my records isn't correct

thanks to outsourcing of transcription services to India. They have a

problem with translation and therefore, the records aren't accurate.

Thanks for letting me vent...

bug

[Guest guest]

Thanks so much Barbara for your input. I have to admit, I've had a

few really positive experiences with Residents. I get extremely

frustrated when I've been admitted to the hospital though and have to

deal with whomever is on call...as you mentioned. I agree about

teaching the future generations and that's why I work with the medical

school students to help them understand chronic illness. I really

hate the whole " chain of command " thing when I'm particularly ill and

want to deal with the Attending. Once, they put me on a floor that

only had Attendings and I loved it ! Wish i could put in a special

request for that floor each time.

hugs,

bug