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I would like to also welcome you Kim you have come to a place where you will

receive good information and make many friends.

Donna K

---- Ann-Marie peetie@...> wrote:

>

> Welcome Kim,

>

> Nice to have you joining our great list. You are now part of a great family.

We are here to help you so please ask any questions that you have, no question

is too " Small " to ask us.

>

> Metabolics play a huge part in Mitochondrial disorders.

>

> I am a 44 yr. old woman who was diagnosed in 1995 with Mitochondrial

Cyotology, but am undergoing more testing at this time, b/c my docs now believe

I fall under the MELAS catagory, esp. since the last few years I have been

having stroke like events.

>

> Where are you from? And how long ago was your muscle biopsy? Where did you

have your biopsy done? And When do they expect your results to be back. Waiting

is so hard when we are looking for answers.

>

> Once again welcome to a wonderful group of people.

> Hugs,

> Ann-Marie

>

>

> newbie

>

>

>

>

> Hi, I'm new to this list. My name is Kim and I'm 41. I'm waiting

> for the results from my second muscle biopsy. After my first visit,

> before tests were run, my MDA doc thought I might have mito. Now it

> looks like it could be metabolic or mito. I hope I'll have an

> answer when the new results come in.

> Kim

>

>

>

>

>

>

>

>

> 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.

>

>

>

>

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Barbara, do you know of any support groups in the Topeka, KS area? I would love

to try to find something more as I am so afraid that is what caused my 48 year

old son's illness and sudden death August 25th. I wasn't even aware that there

was such a word as " Mytochndrial " until Dr. Baker called me in December after

's untimely death. I know you are all busy with you own lives and

concerns, but I don't get much help from my cat (ha). I have been keeping you

in my prayers and have asked my prayer group to do the same. Thank you, Dolores

Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you must be

the same Kim I talked to in the metabolic

support group. Your history sounds the same. I have dropped out of all other

support groups for now due to recovering from Gamma Knife for a benign brain

tumor. Anyway, whether you are the same person or not, welcome to .

This is a great group. You will get lots of information and support here.

Barbara

_____

From: klaga5

Sent: Tuesday, March 01, 2005 8:48 AM

To:

Subject: Re: newbie

Thank you a. I'm just waiting and hoping for a diagnosis. I

just went through pulminary tests too. They want me on c-pap for

apnea, and low oxygen saturation at night. I'm not sure what to

do. I thought bi-pap was better.

My MDA doc has leaned toward thinking I have mito from the

begining. I thought when he told me my first biopsy was PAS

positive that mito was ruled out, but after talking with some

people, found out that may not be true. The biopsy report said

there weren't other components to back up a diagnosis of glycogen

storage disease at this time. They then did the second biopsy 2

months ago. I'm still waiting for results.

Kim

> Kim,

> Welcome to the group. I have found this group to be very

> supportive and very knowledgeable. It is a great group of

people. Do

> not be afraid to ask any questions you may have. Usually someone

has

> gone through something similar.

>

> Smiles,

> a

>

> >

> > Hi, I'm new to this list. My name is Kim and I'm 41. I'm

waiting

> > for the results from my second muscle biopsy. After my first

visit,

> > before tests were run, my MDA doc thought I might have mito.

Now it

> > looks like it could be metabolic or mito. I hope I'll have an

> > answer when the new results come in.

> > Kim

> >

>

>

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Dolores, There is a chapter of United Mitochondrial Disease Foundation

(UMDF) in Kansas City. I was at one meeting in 2001 but have not made it

back since. They meet every month or every other month, whenever enough

people can get together to make it worthwhile. They also sponsor fundraising

events. Contact Pam pammiejmd@...

As far as I know this is the only mito support group in Kansas. We mito

patients are pretty sparse here.

All the other support groups I participate in are online, not local.

B

_____

From: Dolores

Sent: Tuesday, March 01, 2005 2:05 PM

To:

Subject: RE: newbie

*

Barbara, do you know of any support groups in the Topeka, KS area? I would

love to try to find something more as I am so afraid that is what caused my

48 year old son's illness and sudden death August 25th. I wasn't even aware

that there was such a word as " Mytochndrial " until Dr. Baker called me in

December after 's untimely death. I know you are all busy with you own

lives and concerns, but I don't get much help from my cat (ha). I have been

keeping you in my prayers and have asked my prayer group to do the same.

Thank you, Dolores

Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you must

be the same Kim I talked to in the metabolic

support group. Your history sounds the same. I have dropped out of all other

support groups for now due to recovering from Gamma Knife for a benign brain

tumor. Anyway, whether you are the same person or not, welcome to .

This is a great group. You will get lots of information and support here.

Barbara

..

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Thanks for the info, but I have no way to get to KC, I am sort of stuck between

a rock and a Dx

of Mytochondrial and what kind and what and where do I go then. My Grandson

does his best for me, but they have a new (one month old) baby girl and she

keeps them busy in their spare time. My surviving son drivesw back and forth to

KC every day so his time is taken up also. He runs what errands he can for me

and dome to see about anything he knows about on the weekends, but that leaves

him very little time for him and his wife. I am not sure about the Chat time on

Monday nights as 9:00 - 10:00 PM EDT, but when I go back in to try to read what

went on it says 9:45 - 11:15 PM EDT, so I don't klnow if when I logged in last

night around 8:00 Topeka time if I was late or on time (I use the nickname

" Dodie " as that is what one of my Aunt's used to call me) last night when I

logged in? Thanks, Dolores

Barbara Seaman wheatchild@...> wrote:

Dolores, There is a chapter of United Mitochondrial Disease Foundation

(UMDF) in Kansas City. I was at one meeting in 2001 but have not made it

back since. They meet every month or every other month, whenever enough

people can get together to make it worthwhile. They also sponsor fundraising

events. Contact Pam pammiejmd@...

As far as I know this is the only mito support group in Kansas. We mito

patients are pretty sparse here.

All the other support groups I participate in are online, not local.

B

_____

From: Dolores

Sent: Tuesday, March 01, 2005 2:05 PM

To:

Subject: RE: newbie

*

Barbara, do you know of any support groups in the Topeka, KS area? I would

love to try to find something more as I am so afraid that is what caused my

48 year old son's illness and sudden death August 25th. I wasn't even aware

that there was such a word as " Mytochndrial " until Dr. Baker called me in

December after 's untimely death. I know you are all busy with you own

lives and concerns, but I don't get much help from my cat (ha). I have been

keeping you in my prayers and have asked my prayer group to do the same.

Thank you, Dolores

Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you must

be the same Kim I talked to in the metabolic

support group. Your history sounds the same. I have dropped out of all other

support groups for now due to recovering from Gamma Knife for a benign brain

tumor. Anyway, whether you are the same person or not, welcome to .

This is a great group. You will get lots of information and support here.

Barbara

..

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Only a few places in the U.S. do " fresh muscle biopsies " . This

doesn't mean the difference between how they treat you, it's how they

treat the muscle after it is removed. Those of us who have had fresh

muscle biopsies were told that a " runner " is in the operating room to

take the sample IMMEDIATELY for testing to the lab, so most of us

have had to travel to have the testing done.

The local hospital (even if it is a university or research hospital)

probably either just looks for ragged red fibers (a sign of mito) but

they're not present for everyone. There are some tests that can be

done on frozen tissues samples, but I was told that the activities of

the five complexes in the mitochondria can only be tested on " fresh "

samples, that are taken immediately for testing and not frozen.

The shoulder seems like an odd location for a mito disease biopsy - I

think most of us have the biopsy from the front thigh or biceps.

There are a lot of discussions on this list about " fresh "

vs. " frozen " muscle biopsies.

I think some others on this list can discuss how glycogen storage

disease and mito diseases differ. Specific testing for mitochondrial

diseases is generally quite expensive, unless you're " lucky " enough

to have a common genetic defect associated with MELAS or another that

was identified.

Take care,

RH

> > > > Kim,

> > > > Welcome to the group. I have found this group to be

> very

> > > > supportive and very knowledgeable. It is a great group of

> > > people. Do

> > > > not be afraid to ask any questions you may have. Usually

> > someone

> > > has

> > > > gone through something similar.

> > > >

> > > > Smiles,

> > > > a

> > > >

> > > > >

> > > > > Hi, I'm new to this list. My name is Kim and I'm 41. I'm

> > > waiting

> > > > > for the results from my second muscle biopsy. After my

> first

> > > visit,

> > > > > before tests were run, my MDA doc thought I might have

> mito.

> > > Now it

> > > > > looks like it could be metabolic or mito. I hope I'll have

> an

> > > > > answer when the new results come in.

> > > > > Kim

> > > > >

> > > >

> > > >

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Guest guest

Hi, this is punkys mom from last nights chat. I'm eastern time and I'm

almost

possitive it was 10 when you came on, because it was almost over. If I'm

right it

would make it from 6:45 to 8:15 your time. I didn't get on until late and

unless you

were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT.

Hope that helps.

Lois

> [Original Message]

>

> To: >

> Date: 3/1/2005 4:47:30 PM

> Subject: RE: newbie

>

>

>

> Thanks for the info, but I have no way to get to KC, I am sort of stuck

between a rock and a Dx

> of Mytochondrial and what kind and what and where do I go then. My

Grandson does his best for me, but they have a new (one month old) baby

girl and she keeps them busy in their spare time. My surviving son drivesw

back and forth to KC every day so his time is taken up also. He runs what

errands he can for me and dome to see about anything he knows about on the

weekends, but that leaves him very little time for him and his wife. I am

not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but

when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT,

so I don't klnow if when I logged in last night around 8:00 Topeka time if

I was late or on time (I use the nickname " Dodie " as that is what one of my

Aunt's used to call me) last night when I logged in? Thanks, Dolores

>

> Barbara Seaman wheatchild@...> wrote:

> Dolores, There is a chapter of United Mitochondrial Disease Foundation

> (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it

> back since. They meet every month or every other month, whenever enough

> people can get together to make it worthwhile. They also sponsor

fundraising

> events. Contact Pam pammiejmd@...

>

>

>

> As far as I know this is the only mito support group in Kansas. We mito

> patients are pretty sparse here.

>

>

>

> All the other support groups I participate in are online, not local.

>

> B

>

>

>

> _____

>

> From: Dolores

> Sent: Tuesday, March 01, 2005 2:05 PM

> To:

> Subject: RE: newbie

>

>

>

> *

> Barbara, do you know of any support groups in the Topeka, KS area? I

would

> love to try to find something more as I am so afraid that is what caused

my

> 48 year old son's illness and sudden death August 25th. I wasn't even

aware

> that there was such a word as " Mytochndrial " until Dr. Baker called me in

> December after 's untimely death. I know you are all busy with you

own

> lives and concerns, but I don't get much help from my cat (ha). I have

been

> keeping you in my prayers and have asked my prayer group to do the same.

> Thank you, Dolores

>

> Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you

must

> be the same Kim I talked to in the metabolic

> support group. Your history sounds the same. I have dropped out of all

other

> support groups for now due to recovering from Gamma Knife for a benign

brain

> tumor. Anyway, whether you are the same person or not, welcome to

.

> This is a great group. You will get lots of information and support here.

>

>

>

> Barbara

>

>

>

> .

>

>

>

>

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Guest guest

Hi, this is punkys mom from last nights chat. I'm eastern time and I'm

almost

possitive it was 10 when you came on, because it was almost over. If I'm

right it

would make it from 6:45 to 8:15 your time. I didn't get on until late and

unless you

were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT.

Hope that helps.

Lois

> [Original Message]

>

> To: >

> Date: 3/1/2005 4:47:30 PM

> Subject: RE: newbie

>

>

>

> Thanks for the info, but I have no way to get to KC, I am sort of stuck

between a rock and a Dx

> of Mytochondrial and what kind and what and where do I go then. My

Grandson does his best for me, but they have a new (one month old) baby

girl and she keeps them busy in their spare time. My surviving son drivesw

back and forth to KC every day so his time is taken up also. He runs what

errands he can for me and dome to see about anything he knows about on the

weekends, but that leaves him very little time for him and his wife. I am

not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but

when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT,

so I don't klnow if when I logged in last night around 8:00 Topeka time if

I was late or on time (I use the nickname " Dodie " as that is what one of my

Aunt's used to call me) last night when I logged in? Thanks, Dolores

>

> Barbara Seaman wheatchild@...> wrote:

> Dolores, There is a chapter of United Mitochondrial Disease Foundation

> (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it

> back since. They meet every month or every other month, whenever enough

> people can get together to make it worthwhile. They also sponsor

fundraising

> events. Contact Pam pammiejmd@...

>

>

>

> As far as I know this is the only mito support group in Kansas. We mito

> patients are pretty sparse here.

>

>

>

> All the other support groups I participate in are online, not local.

>

> B

>

>

>

> _____

>

> From: Dolores

> Sent: Tuesday, March 01, 2005 2:05 PM

> To:

> Subject: RE: newbie

>

>

>

> *

> Barbara, do you know of any support groups in the Topeka, KS area? I

would

> love to try to find something more as I am so afraid that is what caused

my

> 48 year old son's illness and sudden death August 25th. I wasn't even

aware

> that there was such a word as " Mytochndrial " until Dr. Baker called me in

> December after 's untimely death. I know you are all busy with you

own

> lives and concerns, but I don't get much help from my cat (ha). I have

been

> keeping you in my prayers and have asked my prayer group to do the same.

> Thank you, Dolores

>

> Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you

must

> be the same Kim I talked to in the metabolic

> support group. Your history sounds the same. I have dropped out of all

other

> support groups for now due to recovering from Gamma Knife for a benign

brain

> tumor. Anyway, whether you are the same person or not, welcome to

.

> This is a great group. You will get lots of information and support here.

>

>

>

> Barbara

>

>

>

> .

>

>

>

>

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> am undergoing more testing at this time, b/c my docs now believe I

> fall under the MELAS catagory, esp. since the last few years I

> have been having stroke like events.

That's why I wonder if I may have mito (or MELAS). They always

assumed I had a stroke in college, some 20 years ago. Again 2 1/2

years ago they had to rule out stroke. With the new technology,

they could tell I've never actually had a stroke. I've had

absolutely terrible sharp pains in my head on and off as long as I

can remember. I've even had my right hand, arm, and side of my face

go numb for weeks. I have a couple calcifications on my MRI also.

> Where are you from? And how long ago was your muscle biopsy? Where

> did you have your biopsy done? And When do they expect your

> results to be back? Waiting is so hard when we are looking for

> answers.

I'm in Illinois, and go to the MDA in St Louis. They did both

biopsys. The second one was sent out to Athena labs after they

ruled out the two more common forms of glycogen storage diseases

with the first one. The results were supposed to be back, but the

doc now says another month.

Thanks for the welcome.

Kim

>

> Once again welcome to a wonderful group of people.

> Hugs,

> Ann-Marie

>

>

> newbie

>

>

>

>

> Hi, I'm new to this list. My name is Kim and I'm 41. I'm

waiting

> for the results from my second muscle biopsy. After my first

visit,

> before tests were run, my MDA doc thought I might have mito.

Now it

> looks like it could be metabolic or mito. I hope I'll have an

> answer when the new results come in.

> Kim

>

>

>

>

>

>

>

>

> 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.

>

>

>

>

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Donna K

Thank you for the welcome.

Kim

> >

> > Welcome Kim,

> >

> > Nice to have you joining our great list. You are now part of a

great family. We are here to help you so please ask any questions

that you have, no question is too " Small " to ask us.

> >

> > Metabolics play a huge part in Mitochondrial disorders.

> >

> > I am a 44 yr. old woman who was diagnosed in 1995 with

Mitochondrial Cyotology, but am undergoing more testing at this

time, b/c my docs now believe I fall under the MELAS catagory, esp.

since the last few years I have been having stroke like events.

> >

> > Where are you from? And how long ago was your muscle biopsy?

Where did you have your biopsy done? And When do they expect your

results to be back. Waiting is so hard when we are looking for

answers.

> >

> > Once again welcome to a wonderful group of people.

> > Hugs,

> > Ann-Marie

> >

> >

> > newbie

> >

> >

> >

> >

> > Hi, I'm new to this list. My name is Kim and I'm 41. I'm

waiting

> > for the results from my second muscle biopsy. After my first

visit,

> > before tests were run, my MDA doc thought I might have mito.

Now it

> > looks like it could be metabolic or mito. I hope I'll have an

> > answer when the new results come in.

> > Kim

> >

> >

> >

> >

> >

> >

> >

> >

> > 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.

> >

> >

> >

> >

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Donna K

Thank you for the welcome.

Kim

> >

> > Welcome Kim,

> >

> > Nice to have you joining our great list. You are now part of a

great family. We are here to help you so please ask any questions

that you have, no question is too " Small " to ask us.

> >

> > Metabolics play a huge part in Mitochondrial disorders.

> >

> > I am a 44 yr. old woman who was diagnosed in 1995 with

Mitochondrial Cyotology, but am undergoing more testing at this

time, b/c my docs now believe I fall under the MELAS catagory, esp.

since the last few years I have been having stroke like events.

> >

> > Where are you from? And how long ago was your muscle biopsy?

Where did you have your biopsy done? And When do they expect your

results to be back. Waiting is so hard when we are looking for

answers.

> >

> > Once again welcome to a wonderful group of people.

> > Hugs,

> > Ann-Marie

> >

> >

> > newbie

> >

> >

> >

> >

> > Hi, I'm new to this list. My name is Kim and I'm 41. I'm

waiting

> > for the results from my second muscle biopsy. After my first

visit,

> > before tests were run, my MDA doc thought I might have mito.

Now it

> > looks like it could be metabolic or mito. I hope I'll have an

> > answer when the new results come in.

> > Kim

> >

> >

> >

> >

> >

> >

> >

> >

> > 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.

> >

> >

> >

> >

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Thank you Joanna,

I felt funny joining a couple of these lists, because I don't have a

definate diagnosis yet. I now see I'm not the only one.

Kim

>

> Hi Kim and welcome. I don't know what else I can add. But to let

> you know that this is a safe place. A place to find answers,

> direction, support and friendship.

>

> Joanne

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They called the lab to make sure someone was getting the muscle

sample while I was on the table, so maybe it was fresh. I'll have

to ask my doc when I see him in 6 weeks.

Thanks for the info. If it wasn't fresh, and they don't come up

with a dx, I suppose I'll have to consider traveling to another

place to do it again. I sure hope it won't come to that.

Is there a place close to Illinois that does fresh muscle biopsy?

Kim

> > > > > Kim,

> > > > > Welcome to the group. I have found this group to

be

> > very

> > > > > supportive and very knowledgeable. It is a great group of

> > > > people. Do

> > > > > not be afraid to ask any questions you may have. Usually

> > > someone

> > > > has

> > > > > gone through something similar.

> > > > >

> > > > > Smiles,

> > > > > a

> > > > >

> > > > > >

> > > > > > Hi, I'm new to this list. My name is Kim and I'm 41.

I'm

> > > > waiting

> > > > > > for the results from my second muscle biopsy. After my

> > first

> > > > visit,

> > > > > > before tests were run, my MDA doc thought I might have

> > mito.

> > > > Now it

> > > > > > looks like it could be metabolic or mito. I hope I'll

have

> > an

> > > > > > answer when the new results come in.

> > > > > > Kim

> > > > > >

> > > > >

> > > > >

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They called the lab to make sure someone was getting the muscle

sample while I was on the table, so maybe it was fresh. I'll have

to ask my doc when I see him in 6 weeks.

Thanks for the info. If it wasn't fresh, and they don't come up

with a dx, I suppose I'll have to consider traveling to another

place to do it again. I sure hope it won't come to that.

Is there a place close to Illinois that does fresh muscle biopsy?

Kim

> > > > > Kim,

> > > > > Welcome to the group. I have found this group to

be

> > very

> > > > > supportive and very knowledgeable. It is a great group of

> > > > people. Do

> > > > > not be afraid to ask any questions you may have. Usually

> > > someone

> > > > has

> > > > > gone through something similar.

> > > > >

> > > > > Smiles,

> > > > > a

> > > > >

> > > > > >

> > > > > > Hi, I'm new to this list. My name is Kim and I'm 41.

I'm

> > > > waiting

> > > > > > for the results from my second muscle biopsy. After my

> > first

> > > > visit,

> > > > > > before tests were run, my MDA doc thought I might have

> > mito.

> > > > Now it

> > > > > > looks like it could be metabolic or mito. I hope I'll

have

> > an

> > > > > > answer when the new results come in.

> > > > > > Kim

> > > > > >

> > > > >

> > > > >

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I think maybe Cleveland Clinic does fresh muscle biopsies, but

someone else will correct me if I'm wrong.

The lab (Horizon Molecular Medicine) actually had a person there

before I started surgery and who left immediately with the sample, so

I don't know if that is any different. I think there are a bunch of

people on this list who have had samples tested by Athena labs.

Have you had a MR SPECT? This was one of the few tests I've had that

were abnormal - it can show lactic acid buildup in the brain. I've

had about 8 normal brain MRIs. A MR SPECT might be an option you

could get done in Chicago. I'm not sure if that's definitive for

mito, but is strongly suggestive of it I think. Plus, it's non-

invasive, a joy compared to a muscle biopsy or EMG (shudder! my EMG

was a nightmare, though YMMV).

Take care,

RH

> > > > > > Kim,

> > > > > > Welcome to the group. I have found this group to

> be

> > > very

> > > > > > supportive and very knowledgeable. It is a great group

of

> > > > > people. Do

> > > > > > not be afraid to ask any questions you may have. Usually

> > > > someone

> > > > > has

> > > > > > gone through something similar.

> > > > > >

> > > > > > Smiles,

> > > > > > a

> > > > > >

> > > > > > >

> > > > > > > Hi, I'm new to this list. My name is Kim and I'm 41.

> I'm

> > > > > waiting

> > > > > > > for the results from my second muscle biopsy. After my

> > > first

> > > > > visit,

> > > > > > > before tests were run, my MDA doc thought I might have

> > > mito.

> > > > > Now it

> > > > > > > looks like it could be metabolic or mito. I hope I'll

> have

> > > an

> > > > > > > answer when the new results come in.

> > > > > > > Kim

> > > > > > >

> > > > > >

> > > > > >

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Guest guest

Hi, Punkies Mom, I had logged in right around 8:00 Topeka time (CST) which I

thought would be right as Florida is one hour ahead of me (I think), so that

should make it 9:00 (EDT) and end at 10:00 (EDT). But, when I went back in

after all had loged off, the time given was 9:45 - 11:15 PM EDT. By that time I

was totally lost and I felt that I had interrupted the Chat in some way by

logging in when I did. It was sort of when my Dad started moving around and I

had to try to find a place to fit in (which was hard to do as everyone had their

own little cliques), when I couldn't I would just say forget it. I'm a tad bit

to old for that now, I just need to get my times straight so I won't interrupt

in the middle of something. It is really hard to adjust to being pretty much

alone. My 48 year old son was my helper and when I lost him in August it was a

terrific loss in so many ways. Now I am so very frightened that he died of a

Mytochondrial problem of some kind. He fits in to " Could

It Be Mitochondrial Disease " . I had never heard the word prior to December

2004, when I was told that after rather in-depth research of 31 years of my case

history that it appears that I have a Mytochondrial Dysfunction and not

Parkinsons Disease. I started seeing a new neurologist in January and I did not

ever have Parkinsons as I was told and beiing treat for since 2001. Now I need

to get some minor problems out of the way so I can get a definitive answer as to

what type of Mytochondrial Dysfnction I have. Thank you for your kindness in

trying to help me get my time straightened out before I try it again next week.

One more question, Florida is one hour later than Kansas, right? Also, do I go

by the calendar or something else? I'm lost?? Thanks, Dolores

lois saunders loisanns@...> wrote:

Hi, this is punkys mom from last nights chat. I'm eastern time and I'm

almost

possitive it was 10 when you came on, because it was almost over. If I'm

right it

would make it from 6:45 to 8:15 your time. I didn't get on until late and

unless you

were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT.

Hope that helps.

Lois

> [Original Message]

>

> To: >

> Date: 3/1/2005 4:47:30 PM

> Subject: RE: newbie

>

>

>

> Thanks for the info, but I have no way to get to KC, I am sort of stuck

between a rock and a Dx

> of Mytochondrial and what kind and what and where do I go then. My

Grandson does his best for me, but they have a new (one month old) baby

girl and she keeps them busy in their spare time. My surviving son drivesw

back and forth to KC every day so his time is taken up also. He runs what

errands he can for me and dome to see about anything he knows about on the

weekends, but that leaves him very little time for him and his wife. I am

not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but

when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT,

so I don't klnow if when I logged in last night around 8:00 Topeka time if

I was late or on time (I use the nickname " Dodie " as that is what one of my

Aunt's used to call me) last night when I logged in? Thanks, Dolores

>

> Barbara Seaman wheatchild@...> wrote:

> Dolores, There is a chapter of United Mitochondrial Disease Foundation

> (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it

> back since. They meet every month or every other month, whenever enough

> people can get together to make it worthwhile. They also sponsor

fundraising

> events. Contact Pam pammiejmd@...

>

>

>

> As far as I know this is the only mito support group in Kansas. We mito

> patients are pretty sparse here.

>

>

>

> All the other support groups I participate in are online, not local.

>

> B

>

>

>

> _____

>

> From: Dolores

> Sent: Tuesday, March 01, 2005 2:05 PM

> To:

> Subject: RE: newbie

>

>

>

> *

> Barbara, do you know of any support groups in the Topeka, KS area? I

would

> love to try to find something more as I am so afraid that is what caused

my

> 48 year old son's illness and sudden death August 25th. I wasn't even

aware

> that there was such a word as " Mytochndrial " until Dr. Baker called me in

> December after 's untimely death. I know you are all busy with you

own

> lives and concerns, but I don't get much help from my cat (ha). I have

been

> keeping you in my prayers and have asked my prayer group to do the same.

> Thank you, Dolores

>

> Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you

must

> be the same Kim I talked to in the metabolic

> support group. Your history sounds the same. I have dropped out of all

other

> support groups for now due to recovering from Gamma Knife for a benign

brain

> tumor. Anyway, whether you are the same person or not, welcome to

.

> This is a great group. You will get lots of information and support here.

>

>

>

> Barbara

>

>

>

> .

>

>

>

>

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Guest guest

Hi, Punkies Mom, I had logged in right around 8:00 Topeka time (CST) which I

thought would be right as Florida is one hour ahead of me (I think), so that

should make it 9:00 (EDT) and end at 10:00 (EDT). But, when I went back in

after all had loged off, the time given was 9:45 - 11:15 PM EDT. By that time I

was totally lost and I felt that I had interrupted the Chat in some way by

logging in when I did. It was sort of when my Dad started moving around and I

had to try to find a place to fit in (which was hard to do as everyone had their

own little cliques), when I couldn't I would just say forget it. I'm a tad bit

to old for that now, I just need to get my times straight so I won't interrupt

in the middle of something. It is really hard to adjust to being pretty much

alone. My 48 year old son was my helper and when I lost him in August it was a

terrific loss in so many ways. Now I am so very frightened that he died of a

Mytochondrial problem of some kind. He fits in to " Could

It Be Mitochondrial Disease " . I had never heard the word prior to December

2004, when I was told that after rather in-depth research of 31 years of my case

history that it appears that I have a Mytochondrial Dysfunction and not

Parkinsons Disease. I started seeing a new neurologist in January and I did not

ever have Parkinsons as I was told and beiing treat for since 2001. Now I need

to get some minor problems out of the way so I can get a definitive answer as to

what type of Mytochondrial Dysfnction I have. Thank you for your kindness in

trying to help me get my time straightened out before I try it again next week.

One more question, Florida is one hour later than Kansas, right? Also, do I go

by the calendar or something else? I'm lost?? Thanks, Dolores

lois saunders loisanns@...> wrote:

Hi, this is punkys mom from last nights chat. I'm eastern time and I'm

almost

possitive it was 10 when you came on, because it was almost over. If I'm

right it

would make it from 6:45 to 8:15 your time. I didn't get on until late and

unless you

were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT.

Hope that helps.

Lois

> [Original Message]

>

> To: >

> Date: 3/1/2005 4:47:30 PM

> Subject: RE: newbie

>

>

>

> Thanks for the info, but I have no way to get to KC, I am sort of stuck

between a rock and a Dx

> of Mytochondrial and what kind and what and where do I go then. My

Grandson does his best for me, but they have a new (one month old) baby

girl and she keeps them busy in their spare time. My surviving son drivesw

back and forth to KC every day so his time is taken up also. He runs what

errands he can for me and dome to see about anything he knows about on the

weekends, but that leaves him very little time for him and his wife. I am

not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but

when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT,

so I don't klnow if when I logged in last night around 8:00 Topeka time if

I was late or on time (I use the nickname " Dodie " as that is what one of my

Aunt's used to call me) last night when I logged in? Thanks, Dolores

>

> Barbara Seaman wheatchild@...> wrote:

> Dolores, There is a chapter of United Mitochondrial Disease Foundation

> (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it

> back since. They meet every month or every other month, whenever enough

> people can get together to make it worthwhile. They also sponsor

fundraising

> events. Contact Pam pammiejmd@...

>

>

>

> As far as I know this is the only mito support group in Kansas. We mito

> patients are pretty sparse here.

>

>

>

> All the other support groups I participate in are online, not local.

>

> B

>

>

>

> _____

>

> From: Dolores

> Sent: Tuesday, March 01, 2005 2:05 PM

> To:

> Subject: RE: newbie

>

>

>

> *

> Barbara, do you know of any support groups in the Topeka, KS area? I

would

> love to try to find something more as I am so afraid that is what caused

my

> 48 year old son's illness and sudden death August 25th. I wasn't even

aware

> that there was such a word as " Mytochndrial " until Dr. Baker called me in

> December after 's untimely death. I know you are all busy with you

own

> lives and concerns, but I don't get much help from my cat (ha). I have

been

> keeping you in my prayers and have asked my prayer group to do the same.

> Thank you, Dolores

>

> Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you

must

> be the same Kim I talked to in the metabolic

> support group. Your history sounds the same. I have dropped out of all

other

> support groups for now due to recovering from Gamma Knife for a benign

brain

> tumor. Anyway, whether you are the same person or not, welcome to

.

> This is a great group. You will get lots of information and support here.

>

>

>

> Barbara

>

>

>

> .

>

>

>

>

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Guest guest

I haven't heard of an MR SPECT. Thanks for telling me. My MDA doc

has done bloodwork, EMG, and muscle biopsys. Blood showed high

pyruvate.

Does anyone know if MDA St Louis is good? I haven't heard anyone

else on the list say they've gone there. I think they're having a

mito conference later this year there. Is there an MDA in Chicago,

and would it be better?

Kim

> > > > > > > Kim,

> > > > > > > Welcome to the group. I have found this group

to

> > be

> > > > very

> > > > > > > supportive and very knowledgeable. It is a great

group

> of

> > > > > > people. Do

> > > > > > > not be afraid to ask any questions you may have.

Usually

> > > > > someone

> > > > > > has

> > > > > > > gone through something similar.

> > > > > > >

> > > > > > > Smiles,

> > > > > > > a

> > > > > > >

> > > > > > > >

> > > > > > > > Hi, I'm new to this list. My name is Kim and I'm

41.

> > I'm

> > > > > > waiting

> > > > > > > > for the results from my second muscle biopsy. After

my

> > > > first

> > > > > > visit,

> > > > > > > > before tests were run, my MDA doc thought I might

have

> > > > mito.

> > > > > > Now it

> > > > > > > > looks like it could be metabolic or mito. I hope

I'll

> > have

> > > > an

> > > > > > > > answer when the new results come in.

> > > > > > > > Kim

> > > > > > > >

> > > > > > >

> > > > > > >

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Guest guest

Delores,

Yes, one hour, I'm so sorry, I got mixed up. I didn't get on until about

9:45 and I saw you come on after me, that was probably when you came back

on.

There were a lot of people in the chat last night, very hard to keep up.

There were a lot of different conversations going. I also moved a lot

growing up, always

the shy one, never fit in, too skinny, too quiet, too smart, too poor. I

always felt like the one on the outside. Since I found these groups, I

don't feel like that, I feel like

one of the group. Even in the chat room I don't feel like an outsider. I'm

sorry if you felt like that last night. If you are on Monday night, I'll

make sure you're part of the group, I know how it feels being on the

outside looking in. I don't know as much as everybody else, I'm still

learning, but I'll help in any way possible. I'm sure if everybody knew you

went away feeling left out things would have been different. Thats just the

impression I get from everybody.

I'm so sorry to hear about your son. Losing a son of any age is just more

pain than I can imagine. I hope things get easier for you. Maybe this new

neuro can straighten things out so no more damage is done. I've always been

told that when God closes a door he opens a window. I truly believe that.

Things don't always make sense, but when you look back you see the plan a

little better. Just take it one day at a time. Meanwhile if you just need

to blow off some steam, email me. We all need to from time to time.

From what I've seen so far on the reminders they've been the same time, but

like I said I'm still new, so like with the time difference, it doesn't

hurt to second guess.

Best of wishes for you,

Lois

> [Original Message]

>

> To: >

> Date: 3/1/2005 7:25:08 PM

> Subject: RE: newbie

>

>

> Hi, Punkies Mom, I had logged in right around 8:00 Topeka time (CST)

which I thought would be right as Florida is one hour ahead of me (I

think), so that should make it 9:00 (EDT) and end at 10:00 (EDT). But,

when I went back in after all had loged off, the time given was 9:45 -

11:15 PM EDT. By that time I was totally lost and I felt that I had

interrupted the Chat in some way by logging in when I did. It was sort of

when my Dad started moving around and I had to try to find a place to fit

in (which was hard to do as everyone had their own little cliques), when I

couldn't I would just say forget it. I'm a tad bit to old for that now, I

just need to get my times straight so I won't interrupt in the middle of

something. It is really hard to adjust to being pretty much alone. My 48

year old son was my helper and when I lost him in August it was a terrific

loss in so many ways. Now I am so very frightened that he died of a

Mytochondrial problem of some kind. He fits in to " Could

> It Be Mitochondrial Disease " . I had never heard the word prior to

December 2004, when I was told that after rather in-depth research of 31

years of my case history that it appears that I have a Mytochondrial

Dysfunction and not Parkinsons Disease. I started seeing a new neurologist

in January and I did not ever have Parkinsons as I was told and beiing

treat for since 2001. Now I need to get some minor problems out of the way

so I can get a definitive answer as to what type of Mytochondrial

Dysfnction I have. Thank you for your kindness in trying to help me get my

time straightened out before I try it again next week. One more question,

Florida is one hour later than Kansas, right? Also, do I go by the

calendar or something else? I'm lost?? Thanks, Dolores

>

> lois saunders loisanns@...> wrote:

>

> Hi, this is punkys mom from last nights chat. I'm eastern time and I'm

> almost

> possitive it was 10 when you came on, because it was almost over. If I'm

> right it

> would make it from 6:45 to 8:15 your time. I didn't get on until late and

> unless you

> were on earlier too, you came on while I was there. It's 8:45 to 10:15

EDT.

> Hope that helps.

> Lois

>

>

> > [Original Message]

> >

> > To: >

> > Date: 3/1/2005 4:47:30 PM

> > Subject: RE: newbie

> >

> >

> >

> > Thanks for the info, but I have no way to get to KC, I am sort of stuck

> between a rock and a Dx

> > of Mytochondrial and what kind and what and where do I go then. My

> Grandson does his best for me, but they have a new (one month old) baby

> girl and she keeps them busy in their spare time. My surviving son

drivesw

> back and forth to KC every day so his time is taken up also. He runs what

> errands he can for me and dome to see about anything he knows about on the

> weekends, but that leaves him very little time for him and his wife. I am

> not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but

> when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT,

> so I don't klnow if when I logged in last night around 8:00 Topeka time if

> I was late or on time (I use the nickname " Dodie " as that is what one of

my

> Aunt's used to call me) last night when I logged in? Thanks, Dolores

>

> >

> > Barbara Seaman wheatchild@...> wrote:

> > Dolores, There is a chapter of United Mitochondrial Disease Foundation

> > (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it

> > back since. They meet every month or every other month, whenever enough

> > people can get together to make it worthwhile. They also sponsor

> fundraising

> > events. Contact Pam pammiejmd@...

> >

> >

> >

> > As far as I know this is the only mito support group in Kansas. We mito

> > patients are pretty sparse here.

> >

> >

> >

> > All the other support groups I participate in are online, not local.

> >

> > B

> >

> >

> >

> > _____

> >

> > From: Dolores

> > Sent: Tuesday, March 01, 2005 2:05 PM

> > To:

> > Subject: RE: newbie

> >

> >

> >

> > *

> > Barbara, do you know of any support groups in the Topeka, KS area? I

> would

> > love to try to find something more as I am so afraid that is what caused

> my

> > 48 year old son's illness and sudden death August 25th. I wasn't even

> aware

> > that there was such a word as " Mytochndrial " until Dr. Baker called me

in

> > December after 's untimely death. I know you are all busy with you

> own

> > lives and concerns, but I don't get much help from my cat (ha). I have

> been

> > keeping you in my prayers and have asked my prayer group to do the same.

> > Thank you, Dolores

> >

> > Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you

> must

> > be the same Kim I talked to in the metabolic

> > support group. Your history sounds the same. I have dropped out of all

> other

> > support groups for now due to recovering from Gamma Knife for a benign

> brain

> > tumor. Anyway, whether you are the same person or not, welcome to

> .

> > This is a great group. You will get lots of information and support

here.

> >

> >

> >

> > Barbara

> >

> >

> >

> > .

> >

> >

> >

> >

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Guest guest

Delores,

Yes, one hour, I'm so sorry, I got mixed up. I didn't get on until about

9:45 and I saw you come on after me, that was probably when you came back

on.

There were a lot of people in the chat last night, very hard to keep up.

There were a lot of different conversations going. I also moved a lot

growing up, always

the shy one, never fit in, too skinny, too quiet, too smart, too poor. I

always felt like the one on the outside. Since I found these groups, I

don't feel like that, I feel like

one of the group. Even in the chat room I don't feel like an outsider. I'm

sorry if you felt like that last night. If you are on Monday night, I'll

make sure you're part of the group, I know how it feels being on the

outside looking in. I don't know as much as everybody else, I'm still

learning, but I'll help in any way possible. I'm sure if everybody knew you

went away feeling left out things would have been different. Thats just the

impression I get from everybody.

I'm so sorry to hear about your son. Losing a son of any age is just more

pain than I can imagine. I hope things get easier for you. Maybe this new

neuro can straighten things out so no more damage is done. I've always been

told that when God closes a door he opens a window. I truly believe that.

Things don't always make sense, but when you look back you see the plan a

little better. Just take it one day at a time. Meanwhile if you just need

to blow off some steam, email me. We all need to from time to time.

From what I've seen so far on the reminders they've been the same time, but

like I said I'm still new, so like with the time difference, it doesn't

hurt to second guess.

Best of wishes for you,

Lois

> [Original Message]

>

> To: >

> Date: 3/1/2005 7:25:08 PM

> Subject: RE: newbie

>

>

> Hi, Punkies Mom, I had logged in right around 8:00 Topeka time (CST)

which I thought would be right as Florida is one hour ahead of me (I

think), so that should make it 9:00 (EDT) and end at 10:00 (EDT). But,

when I went back in after all had loged off, the time given was 9:45 -

11:15 PM EDT. By that time I was totally lost and I felt that I had

interrupted the Chat in some way by logging in when I did. It was sort of

when my Dad started moving around and I had to try to find a place to fit

in (which was hard to do as everyone had their own little cliques), when I

couldn't I would just say forget it. I'm a tad bit to old for that now, I

just need to get my times straight so I won't interrupt in the middle of

something. It is really hard to adjust to being pretty much alone. My 48

year old son was my helper and when I lost him in August it was a terrific

loss in so many ways. Now I am so very frightened that he died of a

Mytochondrial problem of some kind. He fits in to " Could

> It Be Mitochondrial Disease " . I had never heard the word prior to

December 2004, when I was told that after rather in-depth research of 31

years of my case history that it appears that I have a Mytochondrial

Dysfunction and not Parkinsons Disease. I started seeing a new neurologist

in January and I did not ever have Parkinsons as I was told and beiing

treat for since 2001. Now I need to get some minor problems out of the way

so I can get a definitive answer as to what type of Mytochondrial

Dysfnction I have. Thank you for your kindness in trying to help me get my

time straightened out before I try it again next week. One more question,

Florida is one hour later than Kansas, right? Also, do I go by the

calendar or something else? I'm lost?? Thanks, Dolores

>

> lois saunders loisanns@...> wrote:

>

> Hi, this is punkys mom from last nights chat. I'm eastern time and I'm

> almost

> possitive it was 10 when you came on, because it was almost over. If I'm

> right it

> would make it from 6:45 to 8:15 your time. I didn't get on until late and

> unless you

> were on earlier too, you came on while I was there. It's 8:45 to 10:15

EDT.

> Hope that helps.

> Lois

>

>

> > [Original Message]

> >

> > To: >

> > Date: 3/1/2005 4:47:30 PM

> > Subject: RE: newbie

> >

> >

> >

> > Thanks for the info, but I have no way to get to KC, I am sort of stuck

> between a rock and a Dx

> > of Mytochondrial and what kind and what and where do I go then. My

> Grandson does his best for me, but they have a new (one month old) baby

> girl and she keeps them busy in their spare time. My surviving son

drivesw

> back and forth to KC every day so his time is taken up also. He runs what

> errands he can for me and dome to see about anything he knows about on the

> weekends, but that leaves him very little time for him and his wife. I am

> not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but

> when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT,

> so I don't klnow if when I logged in last night around 8:00 Topeka time if

> I was late or on time (I use the nickname " Dodie " as that is what one of

my

> Aunt's used to call me) last night when I logged in? Thanks, Dolores

>

> >

> > Barbara Seaman wheatchild@...> wrote:

> > Dolores, There is a chapter of United Mitochondrial Disease Foundation

> > (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it

> > back since. They meet every month or every other month, whenever enough

> > people can get together to make it worthwhile. They also sponsor

> fundraising

> > events. Contact Pam pammiejmd@...

> >

> >

> >

> > As far as I know this is the only mito support group in Kansas. We mito

> > patients are pretty sparse here.

> >

> >

> >

> > All the other support groups I participate in are online, not local.

> >

> > B

> >

> >

> >

> > _____

> >

> > From: Dolores

> > Sent: Tuesday, March 01, 2005 2:05 PM

> > To:

> > Subject: RE: newbie

> >

> >

> >

> > *

> > Barbara, do you know of any support groups in the Topeka, KS area? I

> would

> > love to try to find something more as I am so afraid that is what caused

> my

> > 48 year old son's illness and sudden death August 25th. I wasn't even

> aware

> > that there was such a word as " Mytochndrial " until Dr. Baker called me

in

> > December after 's untimely death. I know you are all busy with you

> own

> > lives and concerns, but I don't get much help from my cat (ha). I have

> been

> > keeping you in my prayers and have asked my prayer group to do the same.

> > Thank you, Dolores

> >

> > Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you

> must

> > be the same Kim I talked to in the metabolic

> > support group. Your history sounds the same. I have dropped out of all

> other

> > support groups for now due to recovering from Gamma Knife for a benign

> brain

> > tumor. Anyway, whether you are the same person or not, welcome to

> .

> > This is a great group. You will get lots of information and support

here.

> >

> >

> >

> > Barbara

> >

> >

> >

> > .

> >

> >

> >

> >

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Guest guest

Thank you ,

Kim

> Kim,welcome, warm support and lots of knowledge here...welcome

>

>

>

>

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Kim,

If you go to www.mdausa.org http://www.mdausa.org/> and look for the Find

Local MDA clinic link you can put your zip code in and it will tell you

where the closest MDA clinic is to you and how to get in contact with them.

Sorry I don't know anything about the St. Louis Clinic.

Yes, there will be a conference in St. Louis this year. It is sponsored by

the United Mitochondrial Disease Foundation. For more information on the

conference you can go to the UMDF website at www.umdf.org

http://www.umdf.org/>

Hope to see you in chat again on Monday.

Kristie (Hoodlum)

Message: 17

Date: Wed, 02 Mar 2005 01:02:11 -0000

Subject: Re: newbie

I haven't heard of an MR SPECT. Thanks for telling me. My MDA doc

has done bloodwork, EMG, and muscle biopsys. Blood showed high

pyruvate.

Does anyone know if MDA St Louis is good? I haven't heard anyone

else on the list say they've gone there. I think they're having a

mito conference later this year there. Is there an MDA in Chicago,

and would it be better?

Kim

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I tried your e-mail address, but it wouldn't go thru so I'll see what happens

this way. Again, thanks for your kindness. Dolores

lois saunders loisanns@...> wrote:

Delores,

Yes, one hour, I'm so sorry, I got mixed up. I didn't get on until about

9:45 and I saw you come on after me, that was probably when you came back

on.

There were a lot of people in the chat last night, very hard to keep up.

There were a lot of different conversations going. I also moved a lot

growing up, always

the shy one, never fit in, too skinny, too quiet, too smart, too poor. I

always felt like the one on the outside. Since I found these groups, I

don't feel like that, I feel like

one of the group. Even in the chat room I don't feel like an outsider. I'm

sorry if you felt like that last night. If you are on Monday night, I'll

make sure you're part of the group, I know how it feels being on the

outside looking in. I don't know as much as everybody else, I'm still

learning, but I'll help in any way possible. I'm sure if everybody knew you

went away feeling left out things would have been different. Thats just the

impression I get from everybody.

I'm so sorry to hear about your son. Losing a son of any age is just more

pain than I can imagine. I hope things get easier for you. Maybe this new

neuro can straighten things out so no more damage is done. I've always been

told that when God closes a door he opens a window. I truly believe that.

Things don't always make sense, but when you look back you see the plan a

little better. Just take it one day at a time. Meanwhile if you just need

to blow off some steam, email me. We all need to from time to time.

From what I've seen so far on the reminders they've been the same time, but

like I said I'm still new, so like with the time difference, it doesn't

hurt to second guess.

Best of wishes for you,

Lois

> [Original Message]

>

> To: >

> Date: 3/1/2005 7:25:08 PM

> Subject: RE: newbie

>

>

> Hi, Punkies Mom, I had logged in right around 8:00 Topeka time (CST)

which I thought would be right as Florida is one hour ahead of me (I

think), so that should make it 9:00 (EDT) and end at 10:00 (EDT). But,

when I went back in after all had loged off, the time given was 9:45 -

11:15 PM EDT. By that time I was totally lost and I felt that I had

interrupted the Chat in some way by logging in when I did. It was sort of

when my Dad started moving around and I had to try to find a place to fit

in (which was hard to do as everyone had their own little cliques), when I

couldn't I would just say forget it. I'm a tad bit to old for that now, I

just need to get my times straight so I won't interrupt in the middle of

something. It is really hard to adjust to being pretty much alone. My 48

year old son was my helper and when I lost him in August it was a terrific

loss in so many ways. Now I am so very frightened that he died of a

Mytochondrial problem of some kind. He fits in to " Could

> It Be Mitochondrial Disease " . I had never heard the word prior to

December 2004, when I was told that after rather in-depth research of 31

years of my case history that it appears that I have a Mytochondrial

Dysfunction and not Parkinsons Disease. I started seeing a new neurologist

in January and I did not ever have Parkinsons as I was told and beiing

treat for since 2001. Now I need to get some minor problems out of the way

so I can get a definitive answer as to what type of Mytochondrial

Dysfnction I have. Thank you for your kindness in trying to help me get my

time straightened out before I try it again next week. One more question,

Florida is one hour later than Kansas, right? Also, do I go by the

calendar or something else? I'm lost?? Thanks, Dolores

>

> lois saunders loisanns@...> wrote:

>

> Hi, this is punkys mom from last nights chat. I'm eastern time and I'm

> almost

> possitive it was 10 when you came on, because it was almost over. If I'm

> right it

> would make it from 6:45 to 8:15 your time. I didn't get on until late and

> unless you

> were on earlier too, you came on while I was there. It's 8:45 to 10:15

EDT.

> Hope that helps.

> Lois

>

>

> > [Original Message]

> >

> > To: >

> > Date: 3/1/2005 4:47:30 PM

> > Subject: RE: newbie

> >

> >

> >

> > Thanks for the info, but I have no way to get to KC, I am sort of stuck

> between a rock and a Dx

> > of Mytochondrial and what kind and what and where do I go then. My

> Grandson does his best for me, but they have a new (one month old) baby

> girl and she keeps them busy in their spare time. My surviving son

drivesw

> back and forth to KC every day so his time is taken up also. He runs what

> errands he can for me and dome to see about anything he knows about on the

> weekends, but that leaves him very little time for him and his wife. I am

> not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but

> when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT,

> so I don't klnow if when I logged in last night around 8:00 Topeka time if

> I was late or on time (I use the nickname " Dodie " as that is what one of

my

> Aunt's used to call me) last night when I logged in? Thanks, Dolores

>

> >

> > Barbara Seaman wheatchild@...> wrote:

> > Dolores, There is a chapter of United Mitochondrial Disease Foundation

> > (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it

> > back since. They meet every month or every other month, whenever enough

> > people can get together to make it worthwhile. They also sponsor

> fundraising

> > events. Contact Pam pammiejmd@...

> >

> >

> >

> > As far as I know this is the only mito support group in Kansas. We mito

> > patients are pretty sparse here.

> >

> >

> >

> > All the other support groups I participate in are online, not local.

> >

> > B

> >

> >

> >

> > _____

> >

> > From: Dolores

> > Sent: Tuesday, March 01, 2005 2:05 PM

> > To:

> > Subject: RE: newbie

> >

> >

> >

> > *

> > Barbara, do you know of any support groups in the Topeka, KS area? I

> would

> > love to try to find something more as I am so afraid that is what caused

> my

> > 48 year old son's illness and sudden death August 25th. I wasn't even

> aware

> > that there was such a word as " Mytochndrial " until Dr. Baker called me

in

> > December after 's untimely death. I know you are all busy with you

> own

> > lives and concerns, but I don't get much help from my cat (ha). I have

> been

> > keeping you in my prayers and have asked my prayer group to do the same.

> > Thank you, Dolores

> >

> > Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you

> must

> > be the same Kim I talked to in the metabolic

> > support group. Your history sounds the same. I have dropped out of all

> other

> > support groups for now due to recovering from Gamma Knife for a benign

> brain

> > tumor. Anyway, whether you are the same person or not, welcome to

> .

> > This is a great group. You will get lots of information and support

here.

> >

> >

> >

> > Barbara

> >

> >

> >

> > .

> >

> >

> >

> >

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Hi Sue,

Welcome to the list!

It's difficult to know the answer to your question. The one way to

find out would be to remove the almond product and serve something low

in salicylates for snack for several days and see if you see a difference.

Jody

mom to -7 and -9

SCD 1/03

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Guest guest

>

> Hi Sue,

>

> Welcome to the list!

>

> It's difficult to know the answer to your question. The one way to

> find out would be to remove the almond product and serve something low

> in salicylates for snack for several days and see if you see a

difference.

>

>

> Jody

> mom to -7 and -9

> SCD 1/03

>

Hi Jody

Thanks for the welcome.

Do you think using pecans instead would help, according to the info I

have pecans are moderate sals and almonds are very high. I need to

supply some kind of biscuit to her school each day for snack as that is

all she will eat.

Best wishes - Sue

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