Re: Any symptomatic mothers and children?

[Guest guest]

Symptoms I dealt with during pregnancy: EXTREME fatigue, I was so tired I could hardly get out of bed or carry my own body weight around. I also had SEVERE problems with vomitting....24/7 until the day was born.

About a year ago I was diagnosed with Fybromyalgia, but alot of my symptoms are that of MITO....

Who knows?????

[Guest guest]

Symptoms I dealt with during pregnancy: EXTREME fatigue, I was so tired I could hardly get out of bed or carry my own body weight around. I also had SEVERE problems with vomitting....24/7 until the day was born.

About a year ago I was diagnosed with Fybromyalgia, but alot of my symptoms are that of MITO....

Who knows?????

[Guest guest]

Yes. When I was pregnant with Grace many weird things were happening. I was sent to tons of neurologists and cardiologists trying to figure out my symptoms. All I was told was to wait to see if it passes when the baby was born. Most of my symptoms did pass with the birth but I am left with a few of them. The symptoms included heart palpitations, a heart murmur, dizziness, blackout spells and spots in front of my eyes. Even now nobody has ever figured out why this happened. It seems very odd that an ill child can cause this to the mother, but what do I know. I never heard of mito until Grace came along.

[Guest guest]

Yes. When I was pregnant with Grace many weird things were happening. I was sent to tons of neurologists and cardiologists trying to figure out my symptoms. All I was told was to wait to see if it passes when the baby was born. Most of my symptoms did pass with the birth but I am left with a few of them. The symptoms included heart palpitations, a heart murmur, dizziness, blackout spells and spots in front of my eyes. Even now nobody has ever figured out why this happened. It seems very odd that an ill child can cause this to the mother, but what do I know. I never heard of mito until Grace came along.

[Guest guest]

Yes. When I was pregnant with Grace many weird things were happening. I was sent to tons of neurologists and cardiologists trying to figure out my symptoms. All I was told was to wait to see if it passes when the baby was born. Most of my symptoms did pass with the birth but I am left with a few of them. The symptoms included heart palpitations, a heart murmur, dizziness, blackout spells and spots in front of my eyes. Even now nobody has ever figured out why this happened. It seems very odd that an ill child can cause this to the mother, but what do I know. I never heard of mito until Grace came along.

[Guest guest]

Hi,

My son is still getting worked up for mito, but I do know that I have primary immune deficiency syndrome, as does my oldest son, and now my son is being worked up for a metabolic myopathy (possibly mito). Interestingly about the immune system problems is that they are typically either dx in early childhood or in the 30's particularly when women are pregnant. Now, I'm certainly not suggesting by any means that what you are talking about are immune system problems. I'm just trying to say that, from what I've heard and experienced, the stress of pregnancy can make manifest medical conditions that were previously unnoticed.

Anne R

[Guest guest]

Hi,

My son is still getting worked up for mito, but I do know that I have primary immune deficiency syndrome, as does my oldest son, and now my son is being worked up for a metabolic myopathy (possibly mito). Interestingly about the immune system problems is that they are typically either dx in early childhood or in the 30's particularly when women are pregnant. Now, I'm certainly not suggesting by any means that what you are talking about are immune system problems. I'm just trying to say that, from what I've heard and experienced, the stress of pregnancy can make manifest medical conditions that were previously unnoticed.

Anne R

[Guest guest]

there is alot of symtoms that can happen with mito .... my little girl had mito she passed away in may of this year and she was only six monthes eight days old so it can appaer at anytime... if you think your child has this disease i would suggerst that you take the child to be seen buy your doc. or have a neroligist see the child they are the ones that know about this disease the most .. good luck to you and god bless you shannon

leighs disease

nov. 07, 2002

may 15, 2003

[Guest guest]

These are several of my Mito issues. Usually I got them after I had a baby rather than during my pregnancy. The heart palpitations and heart arrhythmias I had just this last pregnancy for the first time and were during the pregnancy, but the other symptoms I have had since 1990. Have you talked to a geneticist about them? Dizziness, black outs, spots, etc. are regular occurrences for me especially for the first year after having a baby. Darla: mommy to Asenath Re: Any symptomatic mothers and children? Yes. When I was pregnant with Grace many weird things were happening. I was sent to tons of neurologists and cardiologists trying to figure out my symptoms. All I was told was to wait to see if it passes when the baby was born. Most of my symptoms did pass with the birth but I am left with a few of them. The symptoms included heart palpitations, a heart murmur, dizziness, blackout spells and spots in front of my eyes. Even now nobody has ever figured out why this happened. It seems very odd that an ill child can cause this to the mother, but what do I know. I never heard of mito until Grace came along. Please contact mito-owner with any problems or questions.

[Guest guest]

These are several of my Mito issues. Usually I got them after I had a baby rather than during my pregnancy. The heart palpitations and heart arrhythmias I had just this last pregnancy for the first time and were during the pregnancy, but the other symptoms I have had since 1990. Have you talked to a geneticist about them? Dizziness, black outs, spots, etc. are regular occurrences for me especially for the first year after having a baby. Darla: mommy to Asenath Re: Any symptomatic mothers and children? Yes. When I was pregnant with Grace many weird things were happening. I was sent to tons of neurologists and cardiologists trying to figure out my symptoms. All I was told was to wait to see if it passes when the baby was born. Most of my symptoms did pass with the birth but I am left with a few of them. The symptoms included heart palpitations, a heart murmur, dizziness, blackout spells and spots in front of my eyes. Even now nobody has ever figured out why this happened. It seems very odd that an ill child can cause this to the mother, but what do I know. I never heard of mito until Grace came along. Please contact mito-owner with any problems or questions.

[Guest guest]

Your question fit me to a "t". I started having weird, unexplainable neuro type symptoms when i was pregnant with my son. Went through all kinds of tests. Docs thought it was everything from Ms to encephalitis to meningitis. No one could actually figure it out. Finally, my OB just said "weird stuff happens to your body when you're pregnant'> And so i quit worrying about it. My son was born completely syptom free and so i just figured my body goes a little haywire when i'm pregnant. Fast forward 3 yrs to when i'm pregnant with my daughter. SAme type of neuro symptoms, but this time my daughter was born with LOTS of problems, starting at 4 hrs old with not being able to breathe well. Since then, both of my kids have been diagnosed with mitochondrial disorders, although they both show up in completely different forms. My daughter has more difficulty with her internal organs (heart, seizures, bowel and bladder problems), while my son's symptoms show up in his outlying muscles (just diagnosed this past April with Muscular Dystrophy).

ruth

mom to Mitch (8 1/2) and Lexi (5 1/2), both mito affected and my treasures

[Guest guest]

Your question fit me to a "t". I started having weird, unexplainable neuro type symptoms when i was pregnant with my son. Went through all kinds of tests. Docs thought it was everything from Ms to encephalitis to meningitis. No one could actually figure it out. Finally, my OB just said "weird stuff happens to your body when you're pregnant'> And so i quit worrying about it. My son was born completely syptom free and so i just figured my body goes a little haywire when i'm pregnant. Fast forward 3 yrs to when i'm pregnant with my daughter. SAme type of neuro symptoms, but this time my daughter was born with LOTS of problems, starting at 4 hrs old with not being able to breathe well. Since then, both of my kids have been diagnosed with mitochondrial disorders, although they both show up in completely different forms. My daughter has more difficulty with her internal organs (heart, seizures, bowel and bladder problems), while my son's symptoms show up in his outlying muscles (just diagnosed this past April with Muscular Dystrophy).

ruth

mom to Mitch (8 1/2) and Lexi (5 1/2), both mito affected and my treasures

[Guest guest]

The answer to your question is yes. Pregnancy is a huge energy

drain on the female body so it stands to reason that pregnancy would

make you more symptomatic. There are many mothers who notice

symptoms during pregnancy although they do not identify them with

Mito. Later, while they are dealing with very ill children, it's

hard to pay attention to your own symptoms. I actually got my

diagnosis because my oldest daughter had a muscle biopsy which was

positive for the disease. It was somewhat like back tracking

because I had been symtomatic for many years, but too busy taking

care of children - some with special needs - to worry about myself.

At the time it probably wouldn't have made much difference since

they didn't even know that this disease existed.

Now I am diagnosed, 3 of my 4 children are diagnose and 7 of my 14

grandchildren are also diagnosed. My own symptoms worsen pretty

regularly but I'm still a Mom/Grandma and my children and my

grandchildren are my number one concern.

You can join Mitoldies if you are looking for support for yourself.

We have several moms there with affected children.

Alice

http://www.groups.yahoo.com/group/

> When I was pregnant with my son I started having heart conduction

> problems, neuropathy, a new lazy eye (pretty, I know, etc. Then my

> son was born and he started having problems. Now it is possible he

> has mito and we are wondering if my problems which have never been

> diagnosed could be related to his.

>

> We will talk to our doctor obviously but my question is are there

> others here that are symptomatic along with their children? More

> specifically any women here who became symptomatic along with a

pregnancy?

[Guest guest]

I would really love to see someone regarding my concerns, and I also have two other daughters. I think I will have to talk to Cohen about it, though. Even though my labs are coming back abnormal my PCP will not do further testing. He keeps telling me that if I also have mito than I would be sick all the time. Funny that Grace is not sick all the time and she has bad pathology. Oh well, Dr. Cohen has already agreed that I most likely have it too so I am sure he will refer us to someone good.

[Guest guest]

Hi,

Yes, while I was pregnant with our first daughter I had seizures which I had not had prior to being pregnant with her. I also was "over 'fatigued while I was pregnant. I was not one of those glowing pregnant girls by any means. I had severe leg cramps and my sleep walking was at its worst while I was pregnant all three times. I have severe muscle fatigue now to this very day. I have now lost 110 lbs from having the gastric bypass just 4 months ago, but while pregnant I gained excessive amounts of weight with all of my pregnancies. Even though I did everything not to. They say now that it was due to the Mito and my body trying to store up for the kids. I went from 154 when I got pregnant with Kira to 75 lb gain which I had only lost 15 lbs of before I had and lost my twins, I gained 22 lbs with them and then lost only 10 before I was pregnant with our son and gain58 lbs with him. I had lost 5 lbs tops when I got pregnant with our youngest and gained another 55 lbs before I had her and she was 7 weeks early. It was very frustrating the weight issue for sure. I am now under the 300 lb mark and steadily loosing. I have been starting to have some Mito problems and needed a vitamin B shot on Monday but over all I am doing better having lost so much weight in such a short time. I am the Mito worlds experiment for this surgery for sure.

Hugs

O

[Guest guest]

I know we touched on this before but i had major problems with my

pregnancies including diabetes. A lot of pain and now looking back I

think cyclic vomiting. Ihave yet to hear a doc put any pregnant

symptoms related to mito. I think all of us moms need to corner

these doc's somewhere as a group and find the answers we so

desperately need. If you ask every mito doc a question, I know you

would get a different answer from all of them. They need to get on

the same page, sometime soon.

Dawn

[Guest guest]

I had major problems no one could give a good explanation for either..........

Cindy-GA

Re: Any symptomatic mothers and children?

I know we touched on this before but i had major problems with my pregnancies including diabetes. A lot of pain and now looking back I think cyclic vomiting. Ihave yet to hear a doc put any pregnant symptoms related to mito. I think all of us moms need to corner these doc's somewhere as a group and find the answers we so desperately need. If you ask every mito doc a question, I know you would get a different answer from all of them. They need to get on the same page, sometime soon. DawnPlease contact mito-owner with any problems or questions.

[Guest guest]

I had major problems no one could give a good explanation for either..........

Cindy-GA

Re: Any symptomatic mothers and children?

I know we touched on this before but i had major problems with my pregnancies including diabetes. A lot of pain and now looking back I think cyclic vomiting. Ihave yet to hear a doc put any pregnant symptoms related to mito. I think all of us moms need to corner these doc's somewhere as a group and find the answers we so desperately need. If you ask every mito doc a question, I know you would get a different answer from all of them. They need to get on the same page, sometime soon. DawnPlease contact mito-owner with any problems or questions.

[Guest guest]

I had major problems no one could give a good explanation for either..........

Cindy-GA

Re: Any symptomatic mothers and children?

I know we touched on this before but i had major problems with my pregnancies including diabetes. A lot of pain and now looking back I think cyclic vomiting. Ihave yet to hear a doc put any pregnant symptoms related to mito. I think all of us moms need to corner these doc's somewhere as a group and find the answers we so desperately need. If you ask every mito doc a question, I know you would get a different answer from all of them. They need to get on the same page, sometime soon. DawnPlease contact mito-owner with any problems or questions.

[Guest guest]

;

There are MANY adults with Mito who had a diagnosis of Fibromyalgia ....

and countless other things on the way to their Mito diagnosis. Fibromyalgia

is one of those diagnoses that doctors use to brush women off when they don't

know what is going on ... or <grin> menopause!!!!!!

Your pregnancy sounds like mine was ... and I DO have Mito!

Jean

wrote:

Symptoms I dealt with during pregnancy:

EXTREME fatigue, I was so tired I could hardly get out of bed or carry my

own body weight around. I also had SEVERE problems with vomitting....24/7

until the day was born.

About a year ago I was diagnosed with

Fybromyalgia, but alot of my symptoms are that of MITO....

Who knows?????

Please contact mito-owner with any problems or questions.

[Guest guest]

;

There are MANY adults with Mito who had a diagnosis of Fibromyalgia ....

and countless other things on the way to their Mito diagnosis. Fibromyalgia

is one of those diagnoses that doctors use to brush women off when they don't

know what is going on ... or <grin> menopause!!!!!!

Your pregnancy sounds like mine was ... and I DO have Mito!

Jean

wrote:

Symptoms I dealt with during pregnancy:

EXTREME fatigue, I was so tired I could hardly get out of bed or carry my

own body weight around. I also had SEVERE problems with vomitting....24/7

until the day was born.

About a year ago I was diagnosed with

Fybromyalgia, but alot of my symptoms are that of MITO....

Who knows?????

Please contact mito-owner with any problems or questions.