good news

March 30, 2006

Hi Shelby

I totally understand you, I been there with my daughter, I can feel you joy , I

really wish your daughter gets better little by little , Im pretty sure all of

us in this situacion live day by day and enjoy the little improvements in our

childs life, God bless you and your daughter

..william hawthorne whhawt@...> wrote: Hello everyone,

We are happy to say our daughter has improved some. After six months

of laying on the sofa needing total care and not speaking, she is now

talking (Sometimes it makes no sense.), feeding herself some meals and

this morning requested to sleep late. Her neurologist is trying her on

Aricept. Whether that is what has caused the improvement we don't

know. We are enjoying the improvement while we have it. We are all

too aware that it may not last long. Shelby

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.

March 30, 2006

Shelby

I am so glad to hear your news. Thank you so much for taking the time

to let us know.

laurie

> Hello everyone,

> We are happy to say our daughter has improved some. After six months

> of laying on the sofa needing total care and not speaking, she is now

> talking (Sometimes it makes no sense.), feeding herself some meals and

> this morning requested to sleep late. Her neurologist is trying her on

> Aricept. Whether that is what has caused the improvement we don't

> know. We are enjoying the improvement while we have it. We are all

> too aware that it may not last long. Shelby

>

> 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.

>

March 30, 2006

Hi Shelby,

So happy to hear that you are seeing some improvement. I hope the improvement

continues and you have many more beautiful days to share. Keeping you all in my

prayers.

Thank you for sharing your wonderful news!!

Hugs,

Ann-Marie

Good news

Hello everyone,

We are happy to say our daughter has improved some. After six months

of laying on the sofa needing total care and not speaking, she is now

talking (Sometimes it makes no sense.), feeding herself some meals and

this morning requested to sleep late. Her neurologist is trying her on

Aricept. Whether that is what has caused the improvement we don't

know. We are enjoying the improvement while we have it. We are all

too aware that it may not last long. Shelby

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.

March 31, 2006

That is wonderful news Shelby. No doubt it has a lot to do with all the love

and care you have been giving her.

Good news

Hello everyone,

We are happy to say our daughter has improved some. After six months

of laying on the sofa needing total care and not speaking, she is now

talking (Sometimes it makes no sense.), feeding herself some meals and

this morning requested to sleep late. Her neurologist is trying her on

Aricept. Whether that is what has caused the improvement we don't

know. We are enjoying the improvement while we have it. We are all

too aware that it may not last long. Shelby

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.

March 31, 2006

Shelby,

Thank you so much for sharing your joy with the rest of us. I hope your

daughter continues to improve.

Hugs,

william hawthorne wrote:

>Hello everyone,

>We are happy to say our daughter has improved some. After six months

>of laying on the sofa needing total care and not speaking, she is now

>talking (Sometimes it makes no sense.), feeding herself some meals and

>this morning requested to sleep late. Her neurologist is trying her on

>Aricept. Whether that is what has caused the improvement we don't

>know. We are enjoying the improvement while we have it. We are all

>too aware that it may not last long. Shelby

>

>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.

>

May 3, 2006

-Hi Laurie,

That is good news missed you on the chat take care.

Hugs,

Donna K-- Laurie Fitzgerald laurie.fitzgerald@...> wrote:

> Hi

>

> My Baclofen was increased last Friday and I have not had a single

> episode of dystonia. I'm still getting some minor cramping, but living

> with that is easy. I've been able to start back on a few stretches and

> will gradually increase them in hopes of getting back to my

> pre-dystonia level.

>

> laurie

>

> 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.

>

May 4, 2006

Hi Laurie, I have been taking Baclofen for years now.

It is one of my wonder drugs also. I also take sinemet

too. Have you tried that?

--- amerikooch@... wrote:

> -Hi Laurie,

> That is good news missed you on the chat take

> care.

> Hugs,

> Donna K-- Laurie Fitzgerald

> laurie.fitzgerald@...> wrote:

> > Hi

> >

> > My Baclofen was increased last Friday and I have

> not had a single

> > episode of dystonia. I'm still getting some minor

> cramping, but living

> > with that is easy. I've been able to start back on

> a few stretches and

> > will gradually increase them in hopes of getting

> back to my

> > pre-dystonia level.

> >

> > laurie

> >

> > 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.

> >

May 4, 2006

Irene

I haven't taken Sinemet. It is out there in the wings. The Baclofen

dose I was on before worked for about 4 of the 8 hours. Increasing the

number of doses plus an increase in my nighttime dose has been

absolutely wonderful. I e-mailed my neuro to let him know how great

things were going. His response was " fantastic " .

Do you have dystonia? Have you had any genetic testing done? I ask as

I found an article about adult onset dystonia in mito with a defect in

a gene in mtDNA - complex I. I have that defect which was felt to be

insignificant at the time of testing.

laurie

> Hi Laurie, I have been taking Baclofen for years now.

> It is one of my wonder drugs also. I also take sinemet

> too. Have you tried that?

>

> --- amerikooch@... wrote:

>

> > -Hi Laurie,

> > That is good news missed you on the chat take

> > care.

> > Hugs,

> > Donna K-- Laurie Fitzgerald

> > laurie.fitzgerald@...> wrote:

> > > Hi

> > >

> > > My Baclofen was increased last Friday and I have

> > not had a single

> > > episode of dystonia. I'm still getting some minor

> > cramping, but living

> > > with that is easy. I've been able to start back on

> > a few stretches and

> > > will gradually increase them in hopes of getting

> > back to my

> > > pre-dystonia level.

> > >

> > > laurie

> > >

> > > 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.

> > >

May 9, 2006

Hi Laurie: regarding baclofen. I take it two times a

day now and upped dosage. But I had mentioned simemet.

I take cardopa/levodop 25/100 it is cheaper than

sinemet. And it's another wonder drug.

--- Laurie Fitzgerald laurie.fitzgerald@...>

wrote:

> Irene

>

> I haven't taken Sinemet. It is out there in the

> wings. The Baclofen

> dose I was on before worked for about 4 of the 8

> hours. Increasing the

> number of doses plus an increase in my nighttime

> dose has been

> absolutely wonderful. I e-mailed my neuro to let him

> know how great

> things were going. His response was " fantastic " .

>

> Do you have dystonia? Have you had any genetic

> testing done? I ask as

> I found an article about adult onset dystonia in

> mito with a defect in

> a gene in mtDNA - complex I. I have that defect

> which was felt to be

> insignificant at the time of testing.

>

> laurie

>

> On 5/4/06, Irene Sussmann issnowwhite54@...>

> wrote:

> > Hi Laurie, I have been taking Baclofen for years

> now.

> > It is one of my wonder drugs also. I also take

> sinemet

> > too. Have you tried that?

> >

> > --- amerikooch@... wrote:

> >

> > > -Hi Laurie,

> > > That is good news missed you on the chat take

> > > care.

> > > Hugs,

> > > Donna K-- Laurie Fitzgerald

> > > laurie.fitzgerald@...> wrote:

> > > > Hi

> > > >

> > > > My Baclofen was increased last Friday and I

> have

> > > not had a single

> > > > episode of dystonia. I'm still getting some

> minor

> > > cramping, but living

> > > > with that is easy. I've been able to start

> back on

> > > a few stretches and

> > > > will gradually increase them in hopes of

> getting

> > > back to my

> > > > pre-dystonia level.

> > > >

> > > > laurie

> > > >

> > > > 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.

> > > >

May 9, 2006

Irene

After last night, I may need a wonder drug. I went 10 days without any

dystonia and only mild cramping and then everything returned with a

vengence yesterday evening. So far, so good today, so I'm hoping

yesterday was a blast from the past and has returned to hiding. I am

taking 10 mg at breakfast, lunch and dinner and 20 mg. at bedtime. I

can only go up another 10 mg., so keep your fingers crossed for a good

night tonight.

laurie

> Hi Laurie: regarding baclofen. I take it two times a

> day now and upped dosage. But I had mentioned simemet.

> I take cardopa/levodop 25/100 it is cheaper than

> sinemet. And it's another wonder drug.

>

> --- Laurie Fitzgerald laurie.fitzgerald@...>

> wrote:

>

> > Irene

> >

> > I haven't taken Sinemet. It is out there in the

> > wings. The Baclofen

> > dose I was on before worked for about 4 of the 8

> > hours. Increasing the

> > number of doses plus an increase in my nighttime

> > dose has been

> > absolutely wonderful. I e-mailed my neuro to let him

> > know how great

> > things were going. His response was " fantastic " .

> >

> > Do you have dystonia? Have you had any genetic

> > testing done? I ask as

> > I found an article about adult onset dystonia in

> > mito with a defect in

> > a gene in mtDNA - complex I. I have that defect

> > which was felt to be

> > insignificant at the time of testing.

> >

> > laurie

> >

> > On 5/4/06, Irene Sussmann issnowwhite54@...>

> > wrote:

> > > Hi Laurie, I have been taking Baclofen for years

> > now.

> > > It is one of my wonder drugs also. I also take

> > sinemet

> > > too. Have you tried that?

> > >

> > > --- amerikooch@... wrote:

> > >

> > > > -Hi Laurie,

> > > > That is good news missed you on the chat take

> > > > care.

> > > > Hugs,

> > > > Donna K-- Laurie Fitzgerald

> > > > laurie.fitzgerald@...> wrote:

> > > > > Hi

> > > > >

> > > > > My Baclofen was increased last Friday and I

> > have

> > > > not had a single

> > > > > episode of dystonia. I'm still getting some

> > minor

> > > > cramping, but living

> > > > > with that is easy. I've been able to start

> > back on

> > > > a few stretches and

> > > > > will gradually increase them in hopes of

> > getting

> > > > back to my

> > > > > pre-dystonia level.

> > > > >

> > > > > laurie

> > > > >

> > > > > 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.

> > > > >

May 11, 2006

Hi Laurie, I am hopeing right along with you, that

that episode was just a blast from the past. You sure

have had more than your share lately. Stress also

causes so many problems. So don't let it get to you.

Hope you will get some relief soon.

--- Laurie Fitzgerald laurie.fitzgerald@...>

wrote:

> Irene

>

> After last night, I may need a wonder drug. I went

> 10 days without any

> dystonia and only mild cramping and then everything

> returned with a

> vengence yesterday evening. So far, so good today,

> so I'm hoping

> yesterday was a blast from the past and has returned

> to hiding. I am

> taking 10 mg at breakfast, lunch and dinner and 20

> mg. at bedtime. I

> can only go up another 10 mg., so keep your fingers

> crossed for a good

> night tonight.

>

> laurie

>

> On 5/9/06, Irene Sussmann issnowwhite54@...>

> wrote:

> > Hi Laurie: regarding baclofen. I take it two

> times a

> > day now and upped dosage. But I had mentioned

> simemet.

> > I take cardopa/levodop 25/100 it is cheaper than

> > sinemet. And it's another wonder drug.

> >

> > --- Laurie Fitzgerald

> laurie.fitzgerald@...>

> > wrote:

> >

> > > Irene

> > >

> > > I haven't taken Sinemet. It is out there in the

> > > wings. The Baclofen

> > > dose I was on before worked for about 4 of the

> 8

> > > hours. Increasing the

> > > number of doses plus an increase in my

> nighttime

> > > dose has been

> > > absolutely wonderful. I e-mailed my neuro to

> let him

> > > know how great

> > > things were going. His response was

> " fantastic " .

> > >

> > > Do you have dystonia? Have you had any genetic

> > > testing done? I ask as

> > > I found an article about adult onset dystonia

> in

> > > mito with a defect in

> > > a gene in mtDNA - complex I. I have that defect

> > > which was felt to be

> > > insignificant at the time of testing.

> > >

> > > laurie

> > >

> > > On 5/4/06, Irene Sussmann

> issnowwhite54@...>

> > > wrote:

> > > > Hi Laurie, I have been taking Baclofen for

> years

> > > now.

> > > > It is one of my wonder drugs also. I also

> take

> > > sinemet

> > > > too. Have you tried that?

> > > >

> > > > --- amerikooch@... wrote:

> > > >

> > > > > -Hi Laurie,

> > > > > That is good news missed you on the chat

> take

> > > > > care.

> > > > > Hugs,

> > > > > Donna K-- Laurie Fitzgerald

> > > > > laurie.fitzgerald@...> wrote:

> > > > > > Hi

> > > > > >

> > > > > > My Baclofen was increased last Friday

> and I

> > > have

> > > > > not had a single

> > > > > > episode of dystonia. I'm still getting

> some

> > > minor

> > > > > cramping, but living

> > > > > > with that is easy. I've been able to

> start

> > > back on

> > > > > a few stretches and

> > > > > > will gradually increase them in hopes of

> > > getting

> > > > > back to my

> > > > > > pre-dystonia level.

> > > > > >

> > > > > > laurie

> > > > > >

> > > > > > 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.

> > > > > >

May 11, 2006

Irene

Thanks for caring. It was only a single 24 hour period and back to

relief. Now, I am trying to figure out what caused it - may never know

with mito.

I have a question for you and others. Do you have proximal renal

tubular dysfunction? I am trying to see how many have both PRTD and

dystonia (also called spasticity by some or severe cramping by

others).

laurie

>

> Hi Laurie, I am hopeing right along with you, that

> that episode was just a blast from the past. You sure

> have had more than your share lately. Stress also

> causes so many problems. So don't let it get to you.

> Hope you will get some relief soon.

>

> --- Laurie Fitzgerald laurie.fitzgerald@...>

> wrote:

>

> > Irene

> >

> > After last night, I may need a wonder drug. I went

> > 10 days without any

> > dystonia and only mild cramping and then everything

> > returned with a

> > vengence yesterday evening. So far, so good today,

> > so I'm hoping

> > yesterday was a blast from the past and has returned

> > to hiding. I am

> > taking 10 mg at breakfast, lunch and dinner and 20

> > mg. at bedtime. I

> > can only go up another 10 mg., so keep your fingers

> > crossed for a good

> > night tonight.

> >

> > laurie

> >

> > On 5/9/06, Irene Sussmann issnowwhite54@...>

> > wrote:

> > > Hi Laurie: regarding baclofen. I take it two

> > times a

> > > day now and upped dosage. But I had mentioned

> > simemet.

> > > I take cardopa/levodop 25/100 it is cheaper than

> > > sinemet. And it's another wonder drug.

> > >

> > > --- Laurie Fitzgerald

> > laurie.fitzgerald@...>

> > > wrote:

> > >

> > > > Irene

> > > >

> > > > I haven't taken Sinemet. It is out there in the

> > > > wings. The Baclofen

> > > > dose I was on before worked for about 4 of the

> > 8

> > > > hours. Increasing the

> > > > number of doses plus an increase in my

> > nighttime

> > > > dose has been

> > > > absolutely wonderful. I e-mailed my neuro to

> > let him

> > > > know how great

> > > > things were going. His response was

> > " fantastic " .

> > > >

> > > > Do you have dystonia? Have you had any genetic

> > > > testing done? I ask as

> > > > I found an article about adult onset dystonia

> > in

> > > > mito with a defect in

> > > > a gene in mtDNA - complex I. I have that defect

> > > > which was felt to be

> > > > insignificant at the time of testing.

> > > >

> > > > laurie

> > > >

> > > > On 5/4/06, Irene Sussmann

> > issnowwhite54@...>

> > > > wrote:

> > > > > Hi Laurie, I have been taking Baclofen for

> > years

> > > > now.

> > > > > It is one of my wonder drugs also. I also

> > take

> > > > sinemet

> > > > > too. Have you tried that?

> > > > >

> > > > > --- amerikooch@... wrote:

> > > > >

> > > > > > -Hi Laurie,

> > > > > > That is good news missed you on the chat

> > take

> > > > > > care.

> > > > > > Hugs,

> > > > > > Donna K-- Laurie Fitzgerald

> > > > > > laurie.fitzgerald@...> wrote:

> > > > > > > Hi

> > > > > > >

> > > > > > > My Baclofen was increased last Friday

> > and I

> > > > have

> > > > > > not had a single

> > > > > > > episode of dystonia. I'm still getting

> > some

> > > > minor

> > > > > > cramping, but living

> > > > > > > with that is easy. I've been able to

> > start

> > > > back on

> > > > > > a few stretches and

> > > > > > > will gradually increase them in hopes of

> > > > getting

> > > > > > back to my

> > > > > > > pre-dystonia level.

> > > > > > >

> > > > > > > laurie

> > > > > > >

> > > > > > > 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 4, 2006

That's wonderful, Shelby. It's always great to hear good news on this

board!

Best,

Shayna

>

> Hi all,

> I must share our good news. Our 32 yr old daughter with a clinical

> diagnosis of mitochondrial disease had been doing very poorly. She

> went for 6 months without knowing who we were, did not speak, had

> significant dementia and could do nothing for herself. On a lark her

> neurologist tried her on Aricept and she improved some. He then added

> Namenda to the cocktail and she has improved dramatically. She knows

> who we are, carries on simple conversations and can feed herself.

> Today she put a 25 piece puzzle together and was able to go riding and

> out for a sorbet treat. We are overjoyed with the improvement. We

> have no idea how long it will last but we plan to enjoy it while we

> have it. Just had to share.

> Shelby, 's mom

>

June 4, 2006

Shelby,

This is wonderful news!! I am so happy to hear that is enjoying life and

was able to get out and have a sorbet. What amazing strides she is making, doing

a puzzle, carrying on simple conversations, and most of all knowing who her Mom

and Dad are. That is the best.!!

I hope that she continues to improve with her new medications.

God Bless you all

Love and Hugs,

Ann-Marie

Good news

Hi all,

I must share our good news. Our 32 yr old daughter with a clinical

diagnosis of mitochondrial disease had been doing very poorly. She

went for 6 months without knowing who we were, did not speak, had

significant dementia and could do nothing for herself. On a lark her

neurologist tried her on Aricept and she improved some. He then added

Namenda to the cocktail and she has improved dramatically. She knows

who we are, carries on simple conversations and can feed herself.

Today she put a 25 piece puzzle together and was able to go riding and

out for a sorbet treat. We are overjoyed with the improvement. We

have no idea how long it will last but we plan to enjoy it while we

have it. Just had to share.

Shelby, 's mom

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 4, 2006

Thank you so much for sharing your WONDERFUL news!!!

william hawthorne wrote:

>Hi all,

>I must share our good news. Our 32 yr old daughter with a clinical

>diagnosis of mitochondrial disease had been doing very poorly. She

>went for 6 months without knowing who we were, did not speak, had

>significant dementia and could do nothing for herself. On a lark her

>neurologist tried her on Aricept and she improved some. He then added

>Namenda to the cocktail and she has improved dramatically. She knows

>who we are, carries on simple conversations and can feed herself.

>Today she put a 25 piece puzzle together and was able to go riding and

>out for a sorbet treat. We are overjoyed with the improvement. We

>have no idea how long it will last but we plan to enjoy it while we

>have it. Just had to share.

>Shelby, 's mom

>

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June 4, 2006

,

This is wonderful news to read here on Mitoldies. Thank you for

sharing it and congratulations to all of you. I know how this has to

feel.

Alice

June 4, 2006

Shelby

That is wonderful news. You must be so excited. I really appreciate

that you shared your good news about . You will all remain in my

thoughts and prayers.