Re: Mito inheritance questions/Pamela/advising children on giving birth

February 7, 2006

Hi Pamela,

I know I'm usually pretty quiet on this list, but I do try to read most posts,

and keep up on what's posted. Right now, we aren't sure that our family has

Mito, at least at my sis's and my last Neurological/Genetic Dr. visit. But, the

more I've read through the information (again! LOL), the more convinced I am

that more of the Mito signs and symptoms fit, than the diagnosis of Hereditary

Sensory Neuropathy. As far as advising my daughter on having children, when the

time comes for this (she's only ten right now), well, I do plan to have a talk

with her on it. Actually, I plan to have several talks with her, between now

and then! Granted, our family's symptoms are very mild, and so far, there have

been no conclusive tests done. Nothing's been determined, and nothing's been

absolutely ruled out. They all point to " possibly mito " or " possibly HSN " . So,

really for our family, the situation is quite a bit different. Ours is

definitely a nuclear error, so what goes with our generation, is going to go for

the next generation and on down too. In other words, the symptoms will all be

pretty much the same, and happen at aproximately the same age in our lives. So,

since most of our family never had any major problems, and had no symptoms until

our 40's, and my mom is still alive and doing well at age 70 (with some mild

Altzheimers setting in now), it's pretty easy for me to advise my daughter. All

I have to do is let her know of the symptoms, and what she can (and probably

will) pass on to her children, if she chooses to have children. We have no life

threatening symptoms in our family, just mild neuropathy, hearing loss, and the

exercise intolerance, etc. I know if we had more symptoms and more severe

symptoms at that, there would be a lot more to consider about having a family,

and whether or not to bear children. If that were the case, I'd probably be

taking or making opportunities to let my daughter know that I wouldn't want my

grandchildren to suffer the same fate as myself. This is just my opinion, of

course, and having children is definitely a very personal choice, and even with

the risk of mito, we don't know what the future may hold for generations down

the line, so I think all we can do is share our thoughts and feelings with our

kids, and so long as they know the risks, let them make the decision from a well

informed standpoint.

Hope this helps some, I know it's a lot of babbling, and my situation doesn't

fit with everyone here, I know, as there are some who have much more severe

symptoms than myself. I can only speak for myself and what is happening in our

family, and I can't really say what I'd do if the situation were different.

Take care,

Cin

Re: Mito inheritance questions for folks with adult onset of

the disease

Kathleen my kids had dizzy spells and painful legs when they were growing up.

Now in early twenties they are showing signs but not yet diagnosed. As to

myself, some weird things happened throughout my life eg vagueness, deafness

from age 11 in one ear, palpitations and ptosis started early twenties, muscle

fatigue, major trouble breastfeeding, miscarriages, and losing babies in utero,

a seizure and coma in early thirties, uterine prolapse and early menopause at

35, and since then further hearing loss, temporomandibular dysfunction,

depression & anxiety, and five years ago at 50 a major heart attack from a

combination of high cholesterol, pushing my body to perform at work, and

anxiety, and since then lots of muscle spasm, tiredness diabetes. Now I come to

think of it I sound like a real basket case - but I am still around and look

normal, can walk ok and was only recently diagnosed (accidentally) and realised

there was probably a reason for all the funny things that have happened. I don't

know how old you are but the very fact that there is an adult mito list is

encouraging. Lots of the people here have worse things that have happened to

them and have learnt how to manage symptoms. While I am afraid for my children,

at least they have gotten through their babyhood (now in early twenties are

adults too) and have future advances in medical science on their side. I am now

also thinking about my daughter, of child-bearing age, whether/when/how to

advise her about not having her own, should she be diagnosed. (Wonder what

others think about that...) pamela

February 7, 2006

Just wanted to add that in my family my mother was the the only one ever

diagnosed with epilepsy. She used to just faint all of a sudden. Until the

last seizure she had her arm started shaking then she went into a coma.

Until that time diabetes and slight hearing loss was the only common problem in

our family. Looking back heat intolerance and exercise intolerance also.

My grandmother was 95 when she died, my mothers sisters are in their 70's. I

have mild symptoms also.

If I had a girl, have only a boy. I would tell her what my doctor told me when

I thought about a second child. I actually decided against it because I am not

very good with younger children not because of the melas.

He told me that their is a chance that the child will lead a normal life with

only a few mild medical problems that the symptoms can be addressed or the child

may be severely affected or anywhere in between.

With more knowlege and testing in the future who knows what will be possible for

the next generation.

Janet Sample

Re: Mito inheritance questions for folks with adult onset

of the disease