Re: How old are most folks when symptoms begin?

[Guest guest]

I did a 'crash and burn' into the ER at age 36 losing my hearing overnight

and being diagnosed with diabetes. That led to other symptoms and problems.

That was 13 yrs ago.

Taking a look back I was exhibiting symptoms much earlier but nothing

" dramatic " . I was diagnosed in Washington DC and the diagnosis confirmed

(through

biopsy and dna) with Dr. Shoeffner in Atlanta. Vivian

[Guest guest]

Kathleen

I was about 40 when I knew something was wrong. My mother was almost

70. I can now look back and see that I was mildly affected as a child.

It is hard to know abnormal when you have not know normal. I hated

bike riding, could never climb the rope in PE and was always last when

running.

It has been almost 25 years since I suspected something was wrong and

became concerned. I now use a wheelchair and worked up until a year

ago. I still live alone and take care of my house (hard at times and

have to space out the chores), but my progression has been slow. The

general rule (so to speak) is that progression is slower in those

whose symptoms start as an adult rather than as a child. Then there is

the really unusual situation of major improvement of a child. My

youngest son had many symptoms as and infant and young child, but is

doing extrememly well as an adult. He has some exercise intolerance

and is sensitive to the heat, but his other symptoms are gone. He

still has migraines, but they are nothing compared to when he was

younger.

laurie

> Hi, Laurie-

>

> Thanks for the welcome. How long have you been living with mito (I really

> hate giving it a

> cute nickname...)? Is it common for symptoms not to show up until your

> thirties and later?

> All I've found so far in my brief but fairly intense research are pretty

> scary stories about much

> earlier onsets of the disease.

>

> I'm in the Sacramento Metropolitan area and there is only one Mitochondrial

> specialist, a

> reasearcher at UC , in the area. Northern California doesn't seem to

> have a lot of

> resources in general- three doctors in the San Francisco area and one at

> Stanford. How far

> do most of you travel for diagnosis and care?

>

> I'm so glad to have found people to talk to. I've been slowly freaking out

> since the

> neurologist handed me my diagnosis last week.

>

> Kathleen

>

>

>

>

>

> 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 Kathlene, welcome to the group! Like Laurie, i had mild symptoms as

a child, not keeping up with the other kids, Back then i was just

labeled a fragile child. I was very scraunny as a child. It wasnt

until i was 34 yrs old that more symptoms and the ones i had became

really apparent and i thought it was burn-out from taking care of my

youngest son who was born with mito. It took 6 years to get diagnosed

which was very fustrating. it wasnt until i left the family practice i

was at, i switched to were my son is seen, that is when the ball really

got rolling, it was apparent to the docs there that if my son was born

with this and i had the symptoms that i had mito, and i was diagnosed

via muscle biopsy with red ragged fibers and carnitine defysiency. I

started a cocktail treatment and within a month alot of the symptoms

subsided. for me it was a relief getting diagnosed. I hope you find a

specialist soon that understands mito or at least a doc that is willing

to learn everything they can to help you. Until then at least you

found this group which in my opinion knows more about mito than most

docs ever will. hang in there, i know its fustrating right now. I'll

keep you in my prayers, hugs, Barb

[Guest guest]

I have been communicating with a lady whose son is 21 and had seizures/a stroke

and diagnosed with melas.

I am in northeast Wisconsin but she lives in Chico. I will forward your email

to her if you like. Just let me know. I know she is a nurse at a local

hospital there. Maybe she knows of resources.

Janet Sample

How old are most folks when symptoms begin?

Hi, Laurie-

Thanks for the welcome. How long have you been living with mito (I really

hate giving it a

cute nickname...)? Is it common for symptoms not to show up until your

thirties and later?

All I've found so far in my brief but fairly intense research are pretty scary

stories about much

earlier onsets of the disease.

I'm in the Sacramento Metropolitan area and there is only one Mitochondrial

specialist, a

reasearcher at UC , in the area. Northern California doesn't seem to

have a lot of

resources in general- three doctors in the San Francisco area and one at

Stanford. How far

do most of you travel for diagnosis and care?

I'm so glad to have found people to talk to. I've been slowly freaking out

since the

neurologist handed me my diagnosis last week.

Kathleen

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]

Hello,

I was diagnosed in 1997 at the age of 32 but my sister was diagnosed in 1996 at

the age of 33 after going into 2 four days comas 2 years apart and a very

concerned family doctor looking for answers. She was always athletic and never

showed any health problems. I have always been exercise and soheat intolerant,

am now on insulin for diabetes, slight hearing loss in both ears, tire easily,

some constipation problems.

My 13 yr son was diagnosed in dec 2001. his main problem is constipation and

can sleep for 20 hrs at a time when he gets a virus or other health problem.

Nothing will wake him up when he is in his coma like mode. The carniqgel has

helped him tremedously.

My 15 yr old nephew shows no symptoms of melas other than very small and skinny

for his age. Also has a problem with viruses and such.

My mother was always sick--diagnosed as epilepsy when she was 35, on meds. Died

from pneunomia in 1988 at age of 49.

Janet Sample

How old are most folks when symptoms begin?

Hi, Laurie-

Thanks for the welcome. How long have you been living with mito (I really

hate giving it a

cute nickname...)? Is it common for symptoms not to show up until your

thirties and later?

All I've found so far in my brief but fairly intense research are pretty scary

stories about much

earlier onsets of the disease.

I'm in the Sacramento Metropolitan area and there is only one Mitochondrial

specialist, a

reasearcher at UC , in the area. Northern California doesn't seem to

have a lot of

resources in general- three doctors in the San Francisco area and one at

Stanford. How far

do most of you travel for diagnosis and care?

I'm so glad to have found people to talk to. I've been slowly freaking out

since the

neurologist handed me my diagnosis last week.

Kathleen

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.