PS Angie Re: Newly Diagnosed

June 25, 2004

PS to my previous post to you (before I read YOUR very first

post). There are LOTS of mito FAMILIES here. I would say that

probably the majority are mito adults with mito kids, and quite a

few " adult on-set parents " who didn't KNOW they were, until

their kids (or grandkids) got diagnosed (mito " didn't exist " when

" we " were children).

As I said before, I think you're going to feel right at home here.

Anita

June 26, 2004

Are there any signs I should be looking for in my 3 boys or should I just go

right ahead and have them tested to be sure they aren't dealing with this

disease too ... as much as it has affected me in the adult onset form it scares

me to think how it could harm my boys ... I actually think that my mother and

one of my aunts have this too as my mother has had Rheumatoid Arthritis since

she was only 24 and at first they didn't know what she had and had thought it

was Lupus, Limes Disease, and a few other things before finding out that she had

the beginnings of RA and with my aunt she just recently got diagnosed with

Fibromyalgia/Myofacial Pain Syndrome Complex and has also had health problems

through out her life including a rare lymphatic disorder ... it really makes me

wonder if I should recommend for them both to ask to be tested for it just to be

sure that isn't the case ...

~ Gwenni ~

PS Angie Re: Newly Diagnosed

PS to my previous post to you (before I read YOUR very first

post). There are LOTS of mito FAMILIES here. I would say that

probably the majority are mito adults with mito kids, and quite a

few " adult on-set parents " who didn't KNOW they were, until

their kids (or grandkids) got diagnosed (mito " didn't exist " when

" we " were children).

As I said before, I think you're going to feel right at home here.

Anita

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.

June 26, 2004

Gwenni

You might want to check with your doctor on this. In our family, , her

daughter and I have had muscle biopsies. The others have either been

diagnosed by symptoms and some lab work and the others are only suspected of

having mito.

My one son (30 in a couple of weeks) was very symptomatic as a child, but

has gotten better recently. My older son (32) has very mild symptoms and

may never actually have problems.

Muscle biopsies aren't always positive in those with no or mild symptoms. If

they have found the genetic mutation for you, then diagnosis is just a blood

test away.

laurie

>

> Reply-To:

> Date: Sat, 26 Jun 2004 03:01:24 -0500

> To: >

> Subject: Re: PS Angie Re: Newly Diagnosed

>

> Are there any signs I should be looking for in my 3 boys or should I just go

> right ahead and have them tested to be sure they aren't dealing with this

> disease too ... as much as it has affected me in the adult onset form it

> scares me to think how it could harm my boys ... I actually think that my

> mother and one of my aunts have this too as my mother has had Rheumatoid

> Arthritis since she was only 24 and at first they didn't know what she had and

> had thought it was Lupus, Limes Disease, and a few other things before finding

> out that she had the beginnings of RA and with my aunt she just recently got

> diagnosed with Fibromyalgia/Myofacial Pain Syndrome Complex and has also had

> health problems through out her life including a rare lymphatic disorder ...

> it really makes me wonder if I should recommend for them both to ask to be

> tested for it just to be sure that isn't the case ...

>

> ~ Gwenni ~

> PS Angie Re: Newly Diagnosed

>

> PS to my previous post to you (before I read YOUR very first

> post). There are LOTS of mito FAMILIES here. I would say that

> probably the majority are mito adults with mito kids, and quite a

> few " adult on-set parents " who didn't KNOW they were, until

> their kids (or grandkids) got diagnosed (mito " didn't exist " when

> " we " were children).

>

> As I said before, I think you're going to feel right at home here.

>

> Anita

>

> 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.

>

June 26, 2004

Gwenni,

Only have a second, but wanted to mention that testing on your boys

could impact life insurability. Just something to be aware of.

Gwenni wrote:

>Are there any signs I should be looking for in my 3 boys or should I just go