Re: Want advice from other men with similar situations with Mito.

[Guest guest]

,

has a few men on it. It is a adult mito list. there is also adultmito.

they belong to yahoo groups.

[Guest guest]

,

I'm not a man, but I do have Primary Carnitine Deficiency. So did my

first daughter. I've been symptomatic from infancy, and was

diagnosed 17 years ago at age 24. If I can help you to understand

this condition, I am happy to oblige.

Theresa

>

>

> HI. My name is hopkins and I am pretty sure I have

> Mitochondrial Myopathy and Carnitine deffienciey (sorry if I

> mispelled something but this is hard.). I have had the different

> bllodwork that my kids did and am waiting for an appointment to see

a

> specialist that deals with adults in this area. I am 35 and this is

> the first time that I have even heard about these things. I know

this

> may not sound manly, but I am scarred for myself and my kids. I

could

> really use some encouragement from any guys with the same problem.

I

> know this sounds like whining, and maybe it is, but I would

> appreciate any advice that I could use.

>

> Sincerely, Hopkins.

[Guest guest]

Don't be ashamed of being worried. It goes along with the Mito

territory and all of us do it sometimes. I have been affected by Mito

since childhood, but got hit much harder at the age of 20 (presently 34).

There have been good days/years, and bad days/years. One advice I often

have given to people first learning about their possibility of having Mito

is to not assume it means death. Some live a long life. Depending how much

the mitochondria is affected, the organs involved, etc., a person will

behave differently with the disease and possibilities of progression.

Secondly, the best thing you can do for yourself is to listen to your body.

If it says I am tired and weak and need to rest, DO IT! If you overdo it,

you may get worse. It is very similar to MS that way. Avoid the heat as it

also wears you down. Limit stress and avoid viruses too. All these things

cause what we call " Mito crashes, " " stroke episodes, " or " brown outs. "

Lastly, try to find a good doctor who will listen to you, believe your

symptoms, and knows how to treat Mito patients.

You might want to check out the adult Mito groups at yahoo as well.

There are a couple good ones.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Want advice from other men with similar situations with

Mito.

>

>

>

> HI. My name is hopkins and I am pretty sure I have

> Mitochondrial Myopathy and Carnitine deffienciey (sorry if I

> mispelled something but this is hard.). I have had the different

> bllodwork that my kids did and am waiting for an appointment to see a

> specialist that deals with adults in this area. I am 35 and this is

> the first time that I have even heard about these things. I know this

> may not sound manly, but I am scarred for myself and my kids. I could

> really use some encouragement from any guys with the same problem. I

> know this sounds like whining, and maybe it is, but I would

> appreciate any advice that I could use.

>

> Sincerely, Hopkins.

>

>

>

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>