anyone with similar symptoms?

April 20, 2005

I can't talk much with family about the symptoms I have been having

(or ones my younger son experiences who is not diagnosed with mito)

because they obviously think I am reading too much into things. Only

here will others understand why my concerns may be justified. I

would like to know if other adults experience any of these symptoms

or have a similar family history.

My son is Craig, and he is 8 with unspecified mito by way of muscle

biopsy. No evidence of problems with the complexes. He was never

tested for maternal DNA deletions. I am not sure why at this point,

but he saw Dr. Cohen who must not have felt it was warranted. (This

is a question for his appt. with neurologist next week.)

My 6 year old, Dalton, has had some abnormal test results, but not

enough to diagnose anything. He had extreme fatigue that has been

virtually elimated by Carnitor. We give him CoQ10 also. He has

become progressively more hyperactive in the past year or so. (a

major symptom for Craig). He has a lot of trouble overheating and

has had some brief, seizure-type episodes before starting Carnitor.

(Craig has seizures). Also, pain in hands, legs, wrists, etc. before

Carnitor too. He seems to have memory problems. He doesn't

remember things we just said or did. (Craig has significant

problems with some kinds of memory- ie. " Where are we going again

Mom? " over and over, etc.)

I will soon be 40 years old. I have been having a problem with very

stiff legs at times. It makes it difficult to walk normally. I have

also had trouble with my muscles tightening while laying in bed at

night, and it's difficult to get them to " let go. " I have had

trouble walking straight in the middle of the night a few times .

One time I tried my darndest to get to the door to go out of the

room, but could not do it without falling over. I finally gave up

and went back to bed. All these things come and go.

Lately, my back quite often has pins and needles across the mid to

upper section. (Perhaps this could be a chiropractic problem?) I get

pins and needles in my hands and feet/legs quite a bit as well.

The things that bothers me most, though, is that my thinking is

clearly not normal lately. ( Between me and the boys it's beginning

to feel like a nut house around here!) I can't remember something I

just did or recently said. Past events can be difficult as well. I

just introduced myself to another mother at school today who claims

to have met me and talked with me several times in the past! These

kinds of things are happening quite frequently. I also CANNOT stay

focused on what I am doing. I switch tasks constantly and forget

that I was doing something else until I find something cooking on

the stove or the dryer open waiting for clothes from the washer,etc.

Our family has been under an extreme amount of stress for so long

(family tragedies, Craig's progressive problems, rebellious

teenager, on and on!) that I try to assume that is the problem. My

memory does get better when things are going better.

One more minor symptom I have is the need to urinate quite

frequently without any evidence of infection. This also gets better

when not under as much stress.

Sorry to be so long and detailed, but I wanted to be specific enough

to get some input if possible.

If I should see a doctor I have no idea who to see, and I wonder if

things are really bad enough to go yet. We live in Michigan.

THANKS!!

Donna H.

April 21, 2005

Donna,

Where in Michigan do you live? I'm in Grand

Rapids. I certainly can understand about not being

able to talk to family members, my husband thinks I'm

" trying " to make my son have mito. I have a son

who is 11 he has been diagnoosed with

non-specified mito. He takes carnitor and it has

helped alot, he also seems to be more hyper, but I

account it to feeling better. The only place he is

overly active is at home. I'm thrilled because this

is the first year that he has even shown interest in

sports. Neither me or my two daughters have had

testing done. My oldest(16)seems to be ok except for

writing ability and her eyes are not real good. My

youngest (9) has learning problems. Josh has muscle

fatigue sometimes and for the longest time (before

carnitor) he was always having side aches I was not

sure if they were real or " phantom " pains. I am also

40 and right now the only problem that I have is ins

and needles in my hands and feet my finger tips feel

numb most of the time, and I can only write for 2-3

minutes before my hands start falling asleep. I will

ocasionally forget thins sometome but not enough for

worry. What neurologist is your son seeing? Mine

sees Dr. Odonell at Devos childrens hosp. Sorry so

long hope this helped.

Dawn

--- craigsstory wrote:

>

> I can't talk much with family about the symptoms I

> have been having

> (or ones my younger son experiences who is not

> diagnosed with mito)

> because they obviously think I am reading too much

> into things. Only

> here will others understand why my concerns may be

> justified. I

> would like to know if other adults experience any of

> these symptoms

> or have a similar family history.

>

> My son is Craig, and he is 8 with unspecified mito

> by way of muscle

> biopsy. No evidence of problems with the complexes.

> He was never

> tested for maternal DNA deletions. I am not sure

> why at this point,

> but he saw Dr. Cohen who must not have felt it was

> warranted. (This

> is a question for his appt. with neurologist next

> week.)

>

> My 6 year old, Dalton, has had some abnormal test

> results, but not

> enough to diagnose anything. He had extreme fatigue

> that has been

> virtually elimated by Carnitor. We give him CoQ10

> also. He has

> become progressively more hyperactive in the past

> year or so. (a

> major symptom for Craig). He has a lot of trouble

> overheating and

> has had some brief, seizure-type episodes before

> starting Carnitor.

> (Craig has seizures). Also, pain in hands, legs,

> wrists, etc. before

> Carnitor too. He seems to have memory problems. He

> doesn't

> remember things we just said or did. (Craig has

> significant

> problems with some kinds of memory- ie. " Where are

> we going again

> Mom? " over and over, etc.)

>

> I will soon be 40 years old. I have been having a

> problem with very

> stiff legs at times. It makes it difficult to walk

> normally. I have

> also had trouble with my muscles tightening while

> laying in bed at

> night, and it's difficult to get them to " let go. "

> I have had

> trouble walking straight in the middle of the night

> a few times .

> One time I tried my darndest to get to the door to

> go out of the

> room, but could not do it without falling over. I

> finally gave up

> and went back to bed. All these things come and go.

>

> Lately, my back quite often has pins and needles

> across the mid to

> upper section. (Perhaps this could be a chiropractic

> problem?) I get

> pins and needles in my hands and feet/legs quite a

> bit as well.

>

> The things that bothers me most, though, is that my

> thinking is

> clearly not normal lately. ( Between me and the boys

> it's beginning

> to feel like a nut house around here!) I can't

> remember something I

> just did or recently said. Past events can be

> difficult as well. I

> just introduced myself to another mother at school

> today who claims

> to have met me and talked with me several times in

> the past! These

> kinds of things are happening quite frequently. I

> also CANNOT stay

> focused on what I am doing. I switch tasks

> constantly and forget

> that I was doing something else until I find

> something cooking on

> the stove or the dryer open waiting for clothes from

> the washer,etc.

> Our family has been under an extreme amount of

> stress for so long

> (family tragedies, Craig's progressive problems,

> rebellious

> teenager, on and on!) that I try to assume that is

> the problem. My

> memory does get better when things are going better.

>

> One more minor symptom I have is the need to urinate

> quite

> frequently without any evidence of infection. This

> also gets better

> when not under as much stress.

>

> Sorry to be so long and detailed, but I wanted to be

> specific enough

> to get some input if possible.

>

> If I should see a doctor I have no idea who to see,

> and I wonder if

> things are really bad enough to go yet. We live in

> Michigan.

>

> THANKS!!

>

> Donna H.

>

__________________________________________________

April 21, 2005

Donna

I certainly don't have the answers for this but I did want to say that

I think it's definitely possible that the pins and needles you

experience in your fingers and hands and feet (I think) could be the

signs of peripheral neuropathy which is common in mito. In fact, our

mito doc asked me whether Asher had these symptoms. He doesn't but it's

common enough that he would ask me. In addition, the muscles tightening

up remind me of muscle cramps which definitely can happen with mito.

That's another thing our mito expert asked me about and Asher wasn't

having at the time, but now, 6 months later, he is having them. I can't

remember if you said you were on the " cocktail " but it might be a good

thing to try anyway.

The confusion thing I don't know enough about. Some others will