New to all this--58-yr-old sister with MITO

[Guest guest]

Hi there! I found this board thru UMDF and wondered if any of you

have any experience with adult-onset MITO? Surfing thru the board, I

have only found many sad, but wonderful, letters re your children.

My sister has been ill since last June and has had at least three

stroke-like episodes. She's been diagnosed as a diabetic since she

was 40 and has become insulin-dependent for about the past ten years.

She was blind for about two weeks in the fall after one of her

episodes and then totally collapsed and was diagnosed with heart

arrythmia. They implanted a pacemaker and advised us that her strokes

were not " normal " strokes and to seek help at Mayo. So we took her to

Mayo (in October) where they performed a muscle biopsy, Echo and

various other tests.

It's late tonight and I don't know what all to say except that we are

so confused. They did find some red, ragged fibers and they also

called this week to say that they think she may have MELAS as about

25% of her cells are affected. Is this common for an adult? I'm so

concerned as my daughter and my niece and I now want to know what we

should expect? I am 53 (prone to severe, frequent migraines and

fatigue) and our mother is 83 and not the healthiest person in the

world, but compared to my sister's condition, she's much better. My

sister no longer recognizes us at times and can barely carry on a

conversation. We live in Louisiana and any and all help/advice y'all

can give me will be greatly appreciated!

Thanks in advance for your help and I hope I've made at least a

little bit of sense here.

Lynn

[Guest guest]

Hi there! I found this board thru UMDF and wondered if any of you

have any experience with adult-onset MITO? Surfing thru the board, I

have only found many sad, but wonderful, letters re your children.

My sister has been ill since last June and has had at least three

stroke-like episodes. She's been diagnosed as a diabetic since she

was 40 and has become insulin-dependent for about the past ten years.

She was blind for about two weeks in the fall after one of her

episodes and then totally collapsed and was diagnosed with heart

arrythmia. They implanted a pacemaker and advised us that her strokes

were not " normal " strokes and to seek help at Mayo. So we took her to

Mayo (in October) where they performed a muscle biopsy, Echo and

various other tests.

It's late tonight and I don't know what all to say except that we are

so confused. They did find some red, ragged fibers and they also

called this week to say that they think she may have MELAS as about

25% of her cells are affected. Is this common for an adult? I'm so

concerned as my daughter and my niece and I now want to know what we

should expect? I am 53 (prone to severe, frequent migraines and

fatigue) and our mother is 83 and not the healthiest person in the

world, but compared to my sister's condition, she's much better. My

sister no longer recognizes us at times and can barely carry on a

conversation. We live in Louisiana and any and all help/advice y'all

can give me will be greatly appreciated!

Thanks in advance for your help and I hope I've made at least a

little bit of sense here.

Lynn

[Guest guest]

There are two other groups for adults with Mito that might be a good

fit for you. Go to yahoogroups.com and look for them (unless someone in

this group can give you specific links). I hope you are able to find the

support you are looking for.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

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

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

New to all this--58-yr-old sister with MITO

>

>

>

> Hi there! I found this board thru UMDF and wondered if any of you

> have any experience with adult-onset MITO? Surfing thru the board, I

> have only found many sad, but wonderful, letters re your children.

>

> My sister has been ill since last June and has had at least three

> stroke-like episodes. She's been diagnosed as a diabetic since she

> was 40 and has become insulin-dependent for about the past ten years.

> She was blind for about two weeks in the fall after one of her

> episodes and then totally collapsed and was diagnosed with heart

> arrythmia. They implanted a pacemaker and advised us that her strokes

> were not " normal " strokes and to seek help at Mayo. So we took her to

> Mayo (in October) where they performed a muscle biopsy, Echo and

> various other tests.

>

> It's late tonight and I don't know what all to say except that we are

> so confused. They did find some red, ragged fibers and they also

> called this week to say that they think she may have MELAS as about

> 25% of her cells are affected. Is this common for an adult? I'm so

> concerned as my daughter and my niece and I now want to know what we

> should expect? I am 53 (prone to severe, frequent migraines and

> fatigue) and our mother is 83 and not the healthiest person in the

> world, but compared to my sister's condition, she's much better. My

> sister no longer recognizes us at times and can barely carry on a

> conversation. We live in Louisiana and any and all help/advice y'all

> can give me will be greatly appreciated!

>

> Thanks in advance for your help and I hope I've made at least a

> little bit of sense here.

>

> Lynn

>

>

>

>

>

>

>

>

>

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

>

[Guest guest]

There are two other groups for adults with Mito that might be a good

fit for you. Go to yahoogroups.com and look for them (unless someone in

this group can give you specific links). I hope you are able to find the

support you are looking for.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

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

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

New to all this--58-yr-old sister with MITO

>

>

>

> Hi there! I found this board thru UMDF and wondered if any of you

> have any experience with adult-onset MITO? Surfing thru the board, I

> have only found many sad, but wonderful, letters re your children.

>

> My sister has been ill since last June and has had at least three

> stroke-like episodes. She's been diagnosed as a diabetic since she

> was 40 and has become insulin-dependent for about the past ten years.

> She was blind for about two weeks in the fall after one of her

> episodes and then totally collapsed and was diagnosed with heart

> arrythmia. They implanted a pacemaker and advised us that her strokes

> were not " normal " strokes and to seek help at Mayo. So we took her to

> Mayo (in October) where they performed a muscle biopsy, Echo and

> various other tests.

>

> It's late tonight and I don't know what all to say except that we are

> so confused. They did find some red, ragged fibers and they also

> called this week to say that they think she may have MELAS as about

> 25% of her cells are affected. Is this common for an adult? I'm so

> concerned as my daughter and my niece and I now want to know what we

> should expect? I am 53 (prone to severe, frequent migraines and

> fatigue) and our mother is 83 and not the healthiest person in the

> world, but compared to my sister's condition, she's much better. My

> sister no longer recognizes us at times and can barely carry on a

> conversation. We live in Louisiana and any and all help/advice y'all

> can give me will be greatly appreciated!

>

> Thanks in advance for your help and I hope I've made at least a

> little bit of sense here.

>

> Lynn

>

>

>

>

>

>

>

>

>

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

>

[Guest guest]

Thanks, Darla! I've been out of town or I would have responded

earlier. You are the only one who sent me advice, so I especially

thank you! I have found a board called " " on Yahoo, but

that's the only one so far. It does seem to be more appropiate to our

situation. Any other suggestions?

Thanks for all that you do and may God Bless you and your Family!

Lynn

> There are two other groups for adults with Mito that might be

a good

> fit for you. Go to yahoogroups.com and look for them (unless

someone in

> this group can give you specific links). I hope you are able to

find the

> support you are looking for.

>

> See www.caringbridge.org/ia/mitomomof9 and

www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

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

tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic

vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

excessive

> phlegm, asthma, trach issues, aberrant subclavian artery,

disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia

(4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

>

>

> New to all this--58-yr-old sister with MITO

>

>

> >

> >

> >

> > Hi there! I found this board thru UMDF and wondered if any of you

> > have any experience with adult-onset MITO? Surfing thru the

board, I

> > have only found many sad, but wonderful, letters re your children.

> >

> > My sister has been ill since last June and has had at least three

> > stroke-like episodes. She's been diagnosed as a diabetic since she

> > was 40 and has become insulin-dependent for about the past ten

years.

> > She was blind for about two weeks in the fall after one of her

> > episodes and then totally collapsed and was diagnosed with heart

> > arrythmia. They implanted a pacemaker and advised us that her

strokes

> > were not " normal " strokes and to seek help at Mayo. So we took

her to

> > Mayo (in October) where they performed a muscle biopsy, Echo and

> > various other tests.

> >

> > It's late tonight and I don't know what all to say except that we

are

> > so confused. They did find some red, ragged fibers and they also

> > called this week to say that they think she may have MELAS as

about

> > 25% of her cells are affected. Is this common for an adult? I'm so

> > concerned as my daughter and my niece and I now want to know what

we

> > should expect? I am 53 (prone to severe, frequent migraines and

> > fatigue) and our mother is 83 and not the healthiest person in the

> > world, but compared to my sister's condition, she's much better.

My

> > sister no longer recognizes us at times and can barely carry on a

> > conversation. We live in Louisiana and any and all help/advice

y'all

> > can give me will be greatly appreciated!

> >

> > Thanks in advance for your help and I hope I've made at least a

> > little bit of sense here.

> >

> > Lynn

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >

[Guest guest]

Thanks, Darla! I've been out of town or I would have responded

earlier. You are the only one who sent me advice, so I especially

thank you! I have found a board called " " on Yahoo, but

that's the only one so far. It does seem to be more appropiate to our

situation. Any other suggestions?

Thanks for all that you do and may God Bless you and your Family!

Lynn

> There are two other groups for adults with Mito that might be

a good

> fit for you. Go to yahoogroups.com and look for them (unless

someone in

> this group can give you specific links). I hope you are able to

find the

> support you are looking for.

>

> See www.caringbridge.org/ia/mitomomof9 and

www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

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

tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic

vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

excessive

> phlegm, asthma, trach issues, aberrant subclavian artery,

disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia

(4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

>

>

> New to all this--58-yr-old sister with MITO

>

>

> >

> >

> >

> > Hi there! I found this board thru UMDF and wondered if any of you

> > have any experience with adult-onset MITO? Surfing thru the

board, I

> > have only found many sad, but wonderful, letters re your children.

> >

> > My sister has been ill since last June and has had at least three

> > stroke-like episodes. She's been diagnosed as a diabetic since she

> > was 40 and has become insulin-dependent for about the past ten

years.

> > She was blind for about two weeks in the fall after one of her

> > episodes and then totally collapsed and was diagnosed with heart

> > arrythmia. They implanted a pacemaker and advised us that her

strokes

> > were not " normal " strokes and to seek help at Mayo. So we took

her to

> > Mayo (in October) where they performed a muscle biopsy, Echo and

> > various other tests.

> >

> > It's late tonight and I don't know what all to say except that we

are

> > so confused. They did find some red, ragged fibers and they also

> > called this week to say that they think she may have MELAS as

about

> > 25% of her cells are affected. Is this common for an adult? I'm so

> > concerned as my daughter and my niece and I now want to know what

we

> > should expect? I am 53 (prone to severe, frequent migraines and

> > fatigue) and our mother is 83 and not the healthiest person in the

> > world, but compared to my sister's condition, she's much better.

My

> > sister no longer recognizes us at times and can barely carry on a

> > conversation. We live in Louisiana and any and all help/advice

y'all

> > can give me will be greatly appreciated!

> >

> > Thanks in advance for your help and I hope I've made at least a

> > little bit of sense here.

> >

> > Lynn

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >

[Guest guest]

Did you see adultmito-subscribe ?

[Guest guest]

Lynn,

I hope you are finding the Mito-oldies group a good fit for you. I was

on it for a while but couldn't keep up with two groups at the same time. I

do know that several of the members on the list have affected kids and so

are on this listing as well. There is another group as well but cannot

remember what the name is. You may want to check around if interested more.

Hope all goes well.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

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

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

New to all this--58-yr-old sister with MITO

> >

> >

> > >

> > >

> > >

> > > Hi there! I found this board thru UMDF and wondered if any of you

> > > have any experience with adult-onset MITO? Surfing thru the

> board, I

> > > have only found many sad, but wonderful, letters re your children.

> > >

> > > My sister has been ill since last June and has had at least three

> > > stroke-like episodes. She's been diagnosed as a diabetic since she

> > > was 40 and has become insulin-dependent for about the past ten

> years.

> > > She was blind for about two weeks in the fall after one of her

> > > episodes and then totally collapsed and was diagnosed with heart

> > > arrythmia. They implanted a pacemaker and advised us that her

> strokes

> > > were not " normal " strokes and to seek help at Mayo. So we took

> her to

> > > Mayo (in October) where they performed a muscle biopsy, Echo and

> > > various other tests.

> > >

> > > It's late tonight and I don't know what all to say except that we

> are

> > > so confused. They did find some red, ragged fibers and they also

> > > called this week to say that they think she may have MELAS as

> about

> > > 25% of her cells are affected. Is this common for an adult? I'm so

> > > concerned as my daughter and my niece and I now want to know what

> we

> > > should expect? I am 53 (prone to severe, frequent migraines and

> > > fatigue) and our mother is 83 and not the healthiest person in the

> > > world, but compared to my sister's condition, she's much better.

> My

> > > sister no longer recognizes us at times and can barely carry on a

> > > conversation. We live in Louisiana and any and all help/advice

> y'all

> > > can give me will be greatly appreciated!

> > >

> > > Thanks in advance for your help and I hope I've made at least a

> > > little bit of sense here.

> > >

> > > Lynn

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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

> questions.

> > >