New...question for adult onset mitochondrials

[Guest guest]

I am currently do the blood/urine testing for mitochondrial disorders.

I am wondering if any of you developed this disorder as an adult, and

if you remember any incidence that brought the symptoms on. I have

been diagnosed with lyme disease, but crashed during the treatment,

which presented new symptoms that were not original to lyme.

I also see where someone wrote about having head trauma at one point,

and I wonder if this could have affected me neurologically. I was

in a head-on collision years ago and hit my head.

Thanks for the time.

Di

[Guest guest]

Di

Looking back I had mild symptoms as a child but didn't realize I had a

problem until an adult. Childbirth was difficult and then brought on more

symptoms. Viruses are known to be a stress for those with a mitochondrial

disorder. My disease has progressed, but slowly as I try to pace myself and

not get too little sleep, physical stress or illness. This has been a big

help to me. I also take the mito cocktail and keep my electrolytes in check.

laurie

>

> Reply-To:

> Date: Tue, 13 Jul 2004 20:21:51 -0000

> To:

> Subject: New...question for adult onset mitochondrials

>

> I am currently do the blood/urine testing for mitochondrial disorders.

> I am wondering if any of you developed this disorder as an adult, and

> if you remember any incidence that brought the symptoms on. I have

> been diagnosed with lyme disease, but crashed during the treatment,

> which presented new symptoms that were not original to lyme.

>

> I also see where someone wrote about having head trauma at one point,

> and I wonder if this could have affected me neurologically. I was

> in a head-on collision years ago and hit my head.

>

> Thanks for the time.

> Di

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Di,

Like Laurie, I know now that I had symptoms in childhood, but didn't

realize something was seriously wrong until I was 19. I was a

sophomore in college and had to take an Air Force aerobics class. It

was the first time in my life I had to do strenuous exercise and

that really set off the mitochondrial disease big time. It would

have happened earlier had I been in a situation that triggered it.

When I was 13 I was cheerleader for one basketball tournament--went

home afterwards and collapsed on the LR floor. I never told anyone

about that at the time and never tried cheerleading again. There

were various other incidents through childhood. My son had more

symptoms from an early age, probably because he was a very active

child by nature. I am now 58 and my son is 30.

Take care,

Barbara

> I am currently do the blood/urine testing for mitochondrial

disorders.

> I am wondering if any of you developed this disorder as an adult,

and

> if you remember any incidence that brought the symptoms on. I have

> been diagnosed with lyme disease, but crashed during the treatment,

> which presented new symptoms that were not original to lyme.

>

> I also see where someone wrote about having head trauma at one

point,

> and I wonder if this could have affected me neurologically. I was

> in a head-on collision years ago and hit my head.

>

> Thanks for the time.

> Di

[Guest guest]

Hi my name is Jan, My Husband has mito his name is Duane, (hind sight being

20 20)

I noticed that in his late 20s he would forget things that he knew but not

significant then in his 30s he fell from a ladder down stairs on to cement

at work and had stitches in his head after that things seemed to progress

more.

then major stress at work put him in to a very deep depression that thru it

in to high gear and had to retire about 8 years ago.

Duane's Mito DR that we just found explained it to me this way his body cant

handle stress or illness the immune system is compromised and will then

decrease in ability because of the trauma.

I hope this helps

Hugs Jan

New...question for adult onset mitochondrials

> I am currently do the blood/urine testing for mitochondrial disorders.

> I am wondering if any of you developed this disorder as an adult, and

> if you remember any incidence that brought the symptoms on. I have

> been diagnosed with lyme disease, but crashed during the treatment,

> which presented new symptoms that were not original to lyme.

>

> I also see where someone wrote about having head trauma at one point,

> and I wonder if this could have affected me neurologically. I was

> in a head-on collision years ago and hit my head.

>

> Thanks for the time.

> Di

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of this

e mail is entirely responsible for its content. List members are reminded of

their responsibility to evaluate the content of the postings and consult

with their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Di,

Looking back I too had weird things but mostly in my late teens. I

had alot of chronic fatigue like episodes in my twentys. I really

got bad when I was pregnant with (complex III/IV mito). I

vomited every day when I was pregnant with her, had severe bone

pain, liver pain, joint pain. I have suffered from migraines my

whole adult life. I hope you find some answers.

Dawn

[Guest guest]

Hi,

I'm Lynda, wife and caregiver to Dewayne(DW). I remember the episode all too

well that brought our life to a screeching halt. It was Oct 17, 1998. We had

the perfect life, both of us careers..(DW a social worker), a productive farm

and a long awaited 8 month old son. DW cut timber all that day....didn't eat

much but snacked around in the woods He came in late, kinda feeling weak but

thought he'd just worked extra hard. While in the shower, he started having

cramps and by the time I got him out, he was in the floor, jerking and cramping

like crazy. He reminded me of the Hulk with his muscles popping up through the

skin. We live in a very rural area and get lots of foreign doctors at the

hospital....20 miles from here. Luckily.....no blessed to be seen by one of

these doctors, she had seen rhabdomyolosis before in her war torn country. She

immediately got him hooked up to IV's and after a 4 day stay, he was " okay. " It

took him a LONG time to over that spell and then it happened more

often....putting up hay, cutting tobacco, etc....Finally found the right answer

in 2001.

Upon looking back, DW and his mother tell me how they used to rub his legs while

he cried as a child....dr. said growing pains......the 4 other children never

had that. Then as a teen playing high school basketball ( a must in KY:), DW

said he never felt in shape.....always had to work twice as hard as others to

keep up. So, we figure that he had it, but wasn't full blown until the dreaded

logging day. Sorry I'm so long winded.....kinda a dreary day here and I get

kinda blue thinking about how things have happened. We still have the perfect

life.....this disease has made us STOP and look around and ENJOY

everything.....we sit on the porch alot and look at the beautiful colors of the

flowers, hummingbirds, clouds, and the moon. Our now grown son of 6 enjoys and

appreciates the same things....he'll come running .... " you'll have to see this

moon, it's gorgeous....thank you Lord " . So there are some good things about the

disease, you just have to look.

All the best to you,

Love, Lynda R.

New...question for adult onset mitochondrials

I am currently do the blood/urine testing for mitochondrial disorders.

I am wondering if any of you developed this disorder as an adult, and

if you remember any incidence that brought the symptoms on. I have

been diagnosed with lyme disease, but crashed during the treatment,

which presented new symptoms that were not original to lyme.

I also see where someone wrote about having head trauma at one point,

and I wonder if this could have affected me neurologically. I was

in a head-on collision years ago and hit my head.

Thanks for the time.

Di

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Hi Lynda,

How bad is your husband now? What can he do and can not do? Is his memory

effected?

Smiles to you,

New...question for adult onset mitochondrials

>

>

> I am currently do the blood/urine testing for mitochondrial disorders.

> I am wondering if any of you developed this disorder as an adult, and

> if you remember any incidence that brought the symptoms on. I have

> been diagnosed with lyme disease, but crashed during the treatment,

> which presented new symptoms that were not original to lyme.

>

> I also see where someone wrote about having head trauma at one point,

> and I wonder if this could have affected me neurologically. I was

> in a head-on collision years ago and hit my head.

>

> Thanks for the time.

> Di

>

>

>

>

> Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of this

e mail is entirely responsible for its content. List members are reminded of

their responsibility to evaluate the content of the postings and consult

with their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one

is automatically moderated or removed depending on the severity of the

attack.

>

>

>

>

[Guest guest]

Hi ,

DW has periods where it seems he levels off, then a definite downhill slide and

then levels out again. We are going through a slide at the moment. He is still

fairly active when he feels " decent " . He stills goes to the barn and feeds most

days....I go with him or else recheck the animals if he does go by himself. He

has become very confused on things recently (last 3-4 months) He forgets to

feed certain stalls, neglects their water, etc... The other night he was getting

ready to boil water in the deep oil fryer. He forgets simple things that he

would have never done before. His neurologist seems to think that the c-pap

machine will help his mind by getting rid of the CO2. I do hope that is

right.....Does anyone know that for sure? I'm afraid that maybe that has killed

the brain cells instead of just damaging them. Anyway he goes for the sleep

study on the 23rd. Of course his 46 pills a day could be clouding his judgment

too! He knows his mind is dulling and that is very disturbing to him.....The

pain is really getting him down....physically exhausted by it. I try very hard

to be patient and extra kind to him.....I have to repeat and explain things to

him like I do our son and that hurts him.

Best to you,

Lynda R.

New...question for adult onset mitochondrials

>

>

> I am currently do the blood/urine testing for mitochondrial disorders.

> I am wondering if any of you developed this disorder as an adult, and

> if you remember any incidence that brought the symptoms on. I have

> been diagnosed with lyme disease, but crashed during the treatment,

> which presented new symptoms that were not original to lyme.

>

> I also see where someone wrote about having head trauma at one point,

> and I wonder if this could have affected me neurologically. I was

> in a head-on collision years ago and hit my head.

>

> Thanks for the time.

> Di

>

>

>

>

> Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of this

e mail is entirely responsible for its content. List members are reminded of

their responsibility to evaluate the content of the postings and consult

with their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one

is automatically moderated or removed depending on the severity of the

attack.

>

>

>

>

[Guest guest]

Poor DW he must feel terrible knowing the decline, but one thing he is

blessed with is a wonderful wife!

Smiles,

Re: New...question for adult onset mitochondrials

> Hi ,

> DW has periods where it seems he levels off, then a definite downhill

slide and then levels out again. We are going through a slide at the

moment. He is still fairly active when he feels " decent " . He stills goes

to the barn and feeds most days....I go with him or else recheck the animals

if he does go by himself. He has become very confused on things recently

(last 3-4 months) He forgets to feed certain stalls, neglects their water,

etc... The other night he was getting ready to boil water in the deep oil

fryer. He forgets simple things that he would have never done before. His

neurologist seems to think that the c-pap machine will help his mind by

getting rid of the CO2. I do hope that is right.....Does anyone know that

for sure? I'm afraid that maybe that has killed the brain cells instead of

just damaging them. Anyway he goes for the sleep study on the 23rd. Of

course his 46 pills a day could be clouding his judgment too! He knows his

mind is dulling and that is very disturbing to him.....The pain is really

getting him down....physically exhausted by it. I try very hard to be

patient and extra kind to him.....I have to repeat and explain things to him

like I do our son and that hurts him.

> Best to you,

> Lynda R.

[Guest guest]

Hi, Lynda

Thank you for sharing Dewayne and your story. It helps me so much when

I see that others had similar unexplained experiences. The " growing

pains " , the having to push to keep up in BB were so right on target.

Maybe luckily for me an auto accident slowed me down so that I never

could push myself past my limit after that. I hope that with time

Dewayne finds some solutions so that you can continue to enjoy the

beauty in life. We do get a different perspective with this. Take

care.

Sunny

> Hi,

> I'm Lynda, wife and caregiver to Dewayne(DW).  I remember the episode

> all too well that brought our life to a screeching halt.  It was Oct

> 17, 1998.  We had the perfect life, both of us careers..(DW a social

> worker), a productive farm and a long awaited 8 month old son.  DW cut

> timber all that day....didn't eat much but snacked around in the woods

> He came in late, kinda feeling weak but thought he'd just worked extra

> hard.  While in the shower, he started having cramps and by the time I

> got him out, he was in the floor, jerking and cramping like crazy.  He

> reminded me of the Hulk with his muscles popping up through the skin. 

> We live in a very rural area and get lots of foreign doctors at the

> hospital....20 miles from here.  Luckily.....no blessed to be seen by

> one of these doctors, she had seen rhabdomyolosis before in her war

> torn country.  She immediately got him hooked up to IV's and after a 4

> day stay, he was " okay. "   It took him a LONG time to over that spell

> and then it happened more often....putting up hay, cutting tobacco,

> etc....Finally found the right answer in 2001. 

> Upon looking back, DW and his mother tell me how they used to rub his

> legs while he cried as a child....dr. said growing pains......the 4

> other children never had that.  Then as a teen playing high school

> basketball ( a must in KY:), DW said he never felt in shape.....always

> had to work twice as hard as others to keep up.  So, we figure that he

> had it, but wasn't full blown until the dreaded logging day.  Sorry

> I'm so long winded.....kinda a dreary day here and I get kinda blue

> thinking about how things have happened.  We still have the perfect

> life.....this disease has made us STOP and look around and ENJOY

> everything.....we sit on the porch alot and look at the beautiful

> colors of the flowers, hummingbirds, clouds, and the moon. Our now

> grown son of 6 enjoys and appreciates the same things....he'll come

> running .... " you'll have to see this moon, it's gorgeous....thank you

> Lord " .  So there are some good things about the disease, you just have

> to look.

> All the best to you,

> Love, Lynda R.

>   New...question for adult onset mitochondrials

>

>

>   I am currently do the blood/urine testing for mitochondrial

> disorders.

>   I am wondering if any of you developed this disorder as an adult,

> and

>   if you remember any incidence that brought the symptoms on.  I have

>   been diagnosed with lyme disease, but crashed during the treatment,

>   which presented new symptoms that were not original to lyme.

>

>   I also see where someone wrote about having head trauma at one

> point,

>   and I wonder if this could have affected me neurologically.  I was

>   in a head-on collision years ago and hit my head.

>

>   Thanks for the time.

>   Di

>

>

>

>

>   Medical advice, information, opinions, data and statements

> contained herein are not necessarily those of the list moderators. The

> author of this e mail is entirely responsible for its content. List

> members are reminded of their responsibility to evaluate the content

> of the postings and consult with their physicians regarding changes in

> their own treatment.

>

>   Personal attacks are not permitted on the list and anyone who sends

> one is automatically moderated or removed depending on the severity of

> the attack.

>

>

>

>