adult metabolic acidosis-posible mito

[Guest guest]

I am a desperate mother of 21 year old daughter (Ale) looking for

help , our story started 2 year ago . Ale was pregnant (3 months)

when she started with complications 4 visits to ER and everybody

thought it was related to her pregnancy, everybody was wrong her

symptoms headache,uncontrollable vertigo,dizzines,tired,

gastrointestinal , reflux, insomnia, rash,lost appetite,

nightmares .Finally the worst day of our lives 7/11/04 she was alone

at home fell a sleep , woke up and fell to the floor, we found her

(it is hard to remember, emotions , if we only new , we woudnt left

her alone) she coudnt respond her respiration was hard, call 911 at

ER a doctor told us she was going to die , it is a long story but at

the end she lost the baby and after 11 days in ICU we left the

hospital with comments from everybody this was a miracle, nobody

toll us what really happen(this was her first episode of metabolic

acidosis ph 6.7, at that time the only thing we wanted was to help

our daughter to go back with her life it took months but finally she

decided to go back to college move to San Tx. UTSA she was

happy and 2 months ago she started with headaches, posibble urinary

infection went to doctors no medicines seemed to help, 2 weeks with

no energy We decided to bring her back to ran some tests,thanks

God , with in 2 days we recognized the symptoms took her to ER and

her 2nd episode of metabolic acidosis(with onion gap)ph 7.1 appear,

went to ICU ran tons of tests, finally the doctors told me they

couldnt find anything wrong, they suggest me taking her to the mayo

clinic (first time I heard this name) or UTSA medical hospital, we

didnt know what to do. A friend refered us to Dr. Canales in El

Paso,Tx (pediatrician) he accepted the case and he is the one who

ordered the lab work for Mito, Melas, we still waiting for

results,every day is hard same sympthoms , my daughter is afraid,

has anxiety, desperate, tired, frustrated.We as parents looking for

information seems the only way to help our daughter. Are there

people in EL Paso, Tx with similar conditions, special hospitals for

this , is there a special doctor for mito,metabolic, is the mayo

clinic expensive, does the insurance cover for this clinic, I am

completly in the dark about this. Reading to the stories help me , I

know Am not alone and I understand that we are responsibles for

educate about this , so we can make the right decisions. God bless

you all. Ale's mom (we are hispanics , I know you would

understand my writting) I know this is not important.

[Guest guest]

Welcome to the group. I think your language is great - better than

mine is at times.

There are mito specialists, but they are few and far between. This

makes it not only hard to travel, but hard to get an appointment. I do

see a mito specialist once a year or so, but my main care is by a

neurologist at the MDA (muscular dystrophy association) clinic. He

wasn't real familiar with mito (8 years ago), but has learned an

amazing amount. You might want to try out an MDA clinic in your area.

They also help out financially with equipment and appointments.

Ask any specific questions and we will do our best to share our

experiences. We are also here when you feel lost and alone.

My son, also, had to leave college because of his mito. He started

having seizures.

Hugs to you and Ale,

laurie

> I am a desperate mother of 21 year old daughter (Ale) looking for

> help , our story started 2 year ago . Ale was pregnant (3 months)

> when she started with complications 4 visits to ER and everybody

> thought it was related to her pregnancy, everybody was wrong her

> symptoms headache,uncontrollable vertigo,dizzines,tired,

> gastrointestinal , reflux, insomnia, rash,lost appetite,

> nightmares .Finally the worst day of our lives 7/11/04 she was alone

> at home fell a sleep , woke up and fell to the floor, we found her

> (it is hard to remember, emotions , if we only new , we woudnt left

> her alone) she coudnt respond her respiration was hard, call 911 at

> ER a doctor told us she was going to die , it is a long story but at

> the end she lost the baby and after 11 days in ICU we left the

> hospital with comments from everybody this was a miracle, nobody

> toll us what really happen(this was her first episode of metabolic

> acidosis ph 6.7, at that time the only thing we wanted was to help

> our daughter to go back with her life it took months but finally she

> decided to go back to college move to San Tx. UTSA she was

> happy and 2 months ago she started with headaches, posibble urinary

> infection went to doctors no medicines seemed to help, 2 weeks with

> no energy We decided to bring her back to ran some tests,thanks

> God , with in 2 days we recognized the symptoms took her to ER and

> her 2nd episode of metabolic acidosis(with onion gap)ph 7.1 appear,

> went to ICU ran tons of tests, finally the doctors told me they

> couldnt find anything wrong, they suggest me taking her to the mayo

> clinic (first time I heard this name) or UTSA medical hospital, we

> didnt know what to do. A friend refered us to Dr. Canales in El

> Paso,Tx (pediatrician) he accepted the case and he is the one who

> ordered the lab work for Mito, Melas, we still waiting for

> results,every day is hard same sympthoms , my daughter is afraid,

> has anxiety, desperate, tired, frustrated.We as parents looking for

> information seems the only way to help our daughter. Are there

> people in EL Paso, Tx with similar conditions, special hospitals for

> this , is there a special doctor for mito,metabolic, is the mayo

> clinic expensive, does the insurance cover for this clinic, I am

> completly in the dark about this. Reading to the stories help me , I

> know Am not alone and I understand that we are responsibles for

> educate about this , so we can make the right decisions. God bless

> you all. Ale's mom (we are hispanics , I know you would

> understand my writting) I know this is not important.

>

>

>

>

>

>

>

>

>

>

> 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.

>

>

>

>

>

>

[Guest guest]

Hi ,

I just want to welcome you to the group and to say that I feel for how

much pain you and your daughter are going through. Unfortunately, I

don't have any answers for you about doctors or insurance or your

daughter's situation, but I'm sure there are people who will give you

more helpful responses than I can. I just wanted to send hugs and good

wishes.

Best,

Shayna

>

> I am a desperate mother of 21 year old daughter (Ale) looking for

> help , our story started 2 year ago . Ale was pregnant (3 months)

> when she started with complications 4 visits to ER and everybody

> thought it was related to her pregnancy, everybody was wrong her

> symptoms headache,uncontrollable vertigo,dizzines,tired,

> gastrointestinal , reflux, insomnia, rash,lost appetite,

> nightmares .Finally the worst day of our lives 7/11/04 she was alone

> at home fell a sleep , woke up and fell to the floor, we found her

> (it is hard to remember, emotions , if we only new , we woudnt left

> her alone) she coudnt respond her respiration was hard, call 911 at

> ER a doctor told us she was going to die , it is a long story but at

> the end she lost the baby and after 11 days in ICU we left the

> hospital with comments from everybody this was a miracle, nobody

> toll us what really happen(this was her first episode of metabolic

> acidosis ph 6.7, at that time the only thing we wanted was to help

> our daughter to go back with her life it took months but finally she

> decided to go back to college move to San Tx. UTSA she was

> happy and 2 months ago she started with headaches, posibble urinary

> infection went to doctors no medicines seemed to help, 2 weeks with

> no energy We decided to bring her back to ran some tests,thanks

> God , with in 2 days we recognized the symptoms took her to ER and

> her 2nd episode of metabolic acidosis(with onion gap)ph 7.1 appear,

> went to ICU ran tons of tests, finally the doctors told me they

> couldnt find anything wrong, they suggest me taking her to the mayo

> clinic (first time I heard this name) or UTSA medical hospital, we

> didnt know what to do. A friend refered us to Dr. Canales in El

> Paso,Tx (pediatrician) he accepted the case and he is the one who

> ordered the lab work for Mito, Melas, we still waiting for

> results,every day is hard same sympthoms , my daughter is afraid,

> has anxiety, desperate, tired, frustrated.We as parents looking for

> information seems the only way to help our daughter. Are there

> people in EL Paso, Tx with similar conditions, special hospitals for

> this , is there a special doctor for mito,metabolic, is the mayo

> clinic expensive, does the insurance cover for this clinic, I am

> completly in the dark about this. Reading to the stories help me , I

> know Am not alone and I understand that we are responsibles for

> educate about this , so we can make the right decisions. God bless

> you all. Ale's mom (we are hispanics , I know you would

> understand my writting) I know this is not important.

>

[Guest guest]

Laurie, You are the first one to respond it feels great, thanks for your advice,

understanding and care. Isela

Laurie Fitzgerald laurie.fitzgerald@...> wrote:

Welcome to the group. I think your language is great - better than

mine is at times.

There are mito specialists, but they are few and far between. This

makes it not only hard to travel, but hard to get an appointment. I do

see a mito specialist once a year or so, but my main care is by a

neurologist at the MDA (muscular dystrophy association) clinic. He

wasn't real familiar with mito (8 years ago), but has learned an

amazing amount. You might want to try out an MDA clinic in your area.

They also help out financially with equipment and appointments.

Ask any specific questions and we will do our best to share our

experiences. We are also here when you feel lost and alone.

My son, also, had to leave college because of his mito. He started

having seizures.

Hugs to you and Ale,

laurie

> I am a desperate mother of 21 year old daughter (Ale) looking for

> help , our story started 2 year ago . Ale was pregnant (3 months)

> when she started with complications 4 visits to ER and everybody

> thought it was related to her pregnancy, everybody was wrong her

> symptoms headache,uncontrollable vertigo,dizzines,tired,

> gastrointestinal , reflux, insomnia, rash,lost appetite,

> nightmares .Finally the worst day of our lives 7/11/04 she was alone

> at home fell a sleep , woke up and fell to the floor, we found her

> (it is hard to remember, emotions , if we only new , we woudnt left

> her alone) she coudnt respond her respiration was hard, call 911 at

> ER a doctor told us she was going to die , it is a long story but at

> the end she lost the baby and after 11 days in ICU we left the

> hospital with comments from everybody this was a miracle, nobody

> toll us what really happen(this was her first episode of metabolic

> acidosis ph 6.7, at that time the only thing we wanted was to help

> our daughter to go back with her life it took months but finally she

> decided to go back to college move to San Tx. UTSA she was

> happy and 2 months ago she started with headaches, posibble urinary

> infection went to doctors no medicines seemed to help, 2 weeks with

> no energy We decided to bring her back to ran some tests,thanks

> God , with in 2 days we recognized the symptoms took her to ER and

> her 2nd episode of metabolic acidosis(with onion gap)ph 7.1 appear,

> went to ICU ran tons of tests, finally the doctors told me they

> couldnt find anything wrong, they suggest me taking her to the mayo

> clinic (first time I heard this name) or UTSA medical hospital, we

> didnt know what to do. A friend refered us to Dr. Canales in El

> Paso,Tx (pediatrician) he accepted the case and he is the one who

> ordered the lab work for Mito, Melas, we still waiting for

> results,every day is hard same sympthoms , my daughter is afraid,

> has anxiety, desperate, tired, frustrated.We as parents looking for

> information seems the only way to help our daughter. Are there

> people in EL Paso, Tx with similar conditions, special hospitals for

> this , is there a special doctor for mito,metabolic, is the mayo

> clinic expensive, does the insurance cover for this clinic, I am

> completly in the dark about this. Reading to the stories help me , I

> know Am not alone and I understand that we are responsibles for

> educate about this , so we can make the right decisions. God bless

> you all. Ale's mom (we are hispanics , I know you would

> understand my writting) I know this is not important.

>

>

>

>

>

>

>

>

>

>

> 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.

>

>

>

>

>

>

[Guest guest]

Hi, Shaynpearl, thank you for caring you are the first to answer , I

appreciate your support.

shaynapearl happyclam8@...> wrote: Hi ,

I just want to welcome you to the group and to say that I feel for how

much pain you and your daughter are going through. Unfortunately, I

don't have any answers for you about doctors or insurance or your

daughter's situation, but I'm sure there are people who will give you

more helpful responses than I can. I just wanted to send hugs and good

wishes.

Best,

Shayna

>

> I am a desperate mother of 21 year old daughter (Ale) looking for

> help , our story started 2 year ago . Ale was pregnant (3 months)

> when she started with complications 4 visits to ER and everybody

> thought it was related to her pregnancy, everybody was wrong her

> symptoms headache,uncontrollable vertigo,dizzines,tired,

> gastrointestinal , reflux, insomnia, rash,lost appetite,

> nightmares .Finally the worst day of our lives 7/11/04 she was alone

> at home fell a sleep , woke up and fell to the floor, we found her

> (it is hard to remember, emotions , if we only new , we woudnt left

> her alone) she coudnt respond her respiration was hard, call 911 at

> ER a doctor told us she was going to die , it is a long story but at

> the end she lost the baby and after 11 days in ICU we left the

> hospital with comments from everybody this was a miracle, nobody

> toll us what really happen(this was her first episode of metabolic

> acidosis ph 6.7, at that time the only thing we wanted was to help

> our daughter to go back with her life it took months but finally she

> decided to go back to college move to San Tx. UTSA she was

> happy and 2 months ago she started with headaches, posibble urinary

> infection went to doctors no medicines seemed to help, 2 weeks with

> no energy We decided to bring her back to ran some tests,thanks

> God , with in 2 days we recognized the symptoms took her to ER and

> her 2nd episode of metabolic acidosis(with onion gap)ph 7.1 appear,

> went to ICU ran tons of tests, finally the doctors told me they

> couldnt find anything wrong, they suggest me taking her to the mayo

> clinic (first time I heard this name) or UTSA medical hospital, we

> didnt know what to do. A friend refered us to Dr. Canales in El

> Paso,Tx (pediatrician) he accepted the case and he is the one who

> ordered the lab work for Mito, Melas, we still waiting for

> results,every day is hard same sympthoms , my daughter is afraid,

> has anxiety, desperate, tired, frustrated.We as parents looking for

> information seems the only way to help our daughter. Are there

> people in EL Paso, Tx with similar conditions, special hospitals for

> this , is there a special doctor for mito,metabolic, is the mayo

> clinic expensive, does the insurance cover for this clinic, I am

> completly in the dark about this. Reading to the stories help me , I

> know Am not alone and I understand that we are responsibles for

> educate about this , so we can make the right decisions. God bless

> you all. Ale's mom (we are hispanics , I know you would

> understand my writting) I know this is not important.

>

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.

[Guest guest]

, we are all keeping you and your daughter in our thoughts. This group is

amazing, very strong in knowledge as well as wonderful as support. If you have

any questions, ask! Also, this goup has information in the " files " section of

the group page, if you want to look there ... but if you have been told

something you don't understand, or are afraid of something that has happened or

someone has said ... tell this group, if you wish. They may not have an answer

but they know most of the places to look and ways to find things out.

Take care and best of luck

--

***********************************************************

Kelta Vineyard

---------------------------------

Find your next car at Yahoo! Canada Autos

[Guest guest]

,

My name is Caroline Pointer, and I live in The Woodlands, Texas, just north of

Houston, Texas. I am originally from the Rio Grande Valley, Mc, Texas. My

family has MELAS -- my mother, my sister, my 2 nephews, my 3 nieces, and myself

have all tested for this. There are more probably, but they don't want to be

tested. My son & daughter are both about to continue testing. Our geneticist

is Dr. Scaglia, and he is a metabolic doctor. He is a wonderful

person, and is very knowledgeable about MELAS and other mitochondrial disorders.

He is with Baylor College of Medicine here in Houston @ The Medical Center. He

works out of Texas Children's Hospital. In fact, my nephew was diagnosed with

MELAS in 1996 (I think the year is right -- it's been a long time). Dr. Scaglia

does research on MELAS. I highly recommend him. In our experience with

doctors, our geneticist (Dr. Scaglia) is our main doctor. Then, once you have

an official diagnosis, then you have other specialists such as cardiologists,

neurologists, ophthalmologists (eye Dr), audiologists (hearing Dr), etc. Think

of an old fashioned wheel. The center of the wheel is called a hub. That would

be (for us) Dr. Scaglia. The other doctors/specialists are the spokes of the

wheel coming out or radiating from the hub. Dr. Scaglia coordinates our care.

The other doctors keep an eye on our current problems and/or potential problems.

If you or anyone else wants some more information please email me @

ThePointerFamily@...ThePointerFamily@...>

Re: adult metabolic acidosis-posible mito

Laurie, You are the first one to respond it feels great, thanks for your

advice, understanding and care. Isela

Laurie Fitzgerald

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

Welcome to the group. I think your language is great - better than

mine is at times.

There are mito specialists, but they are few and far between. This

makes it not only hard to travel, but hard to get an appointment. I do

see a mito specialist once a year or so, but my main care is by a

neurologist at the MDA (muscular dystrophy association) clinic. He

wasn't real familiar with mito (8 years ago), but has learned an

amazing amount. You might want to try out an MDA clinic in your area.

They also help out financially with equipment and appointments.

Ask any specific questions and we will do our best to share our

experiences. We are also here when you feel lost and alone.

My son, also, had to leave college because of his mito. He started

having seizures.

Hugs to you and Ale,

laurie

On 3/1/06, Isela iselamom@...iselamom@...>>

wrote:

> I am a desperate mother of 21 year old daughter (Ale) looking for

> help , our story started 2 year ago . Ale was pregnant (3 months)

> when she started with complications 4 visits to ER and everybody

> thought it was related to her pregnancy, everybody was wrong her

> symptoms headache,uncontrollable vertigo,dizzines,tired,

> gastrointestinal , reflux, insomnia, rash,lost appetite,

> nightmares .Finally the worst day of our lives 7/11/04 she was alone

> at home fell a sleep , woke up and fell to the floor, we found her

> (it is hard to remember, emotions , if we only new , we woudnt left

> her alone) she coudnt respond her respiration was hard, call 911 at

> ER a doctor told us she was going to die , it is a long story but at

> the end she lost the baby and after 11 days in ICU we left the

> hospital with comments from everybody this was a miracle, nobody

> toll us what really happen(this was her first episode of metabolic

> acidosis ph 6.7, at that time the only thing we wanted was to help

> our daughter to go back with her life it took months but finally she

> decided to go back to college move to San Tx. UTSA she was

> happy and 2 months ago she started with headaches, posibble urinary

> infection went to doctors no medicines seemed to help, 2 weeks with

> no energy We decided to bring her back to ran some tests,thanks

> God , with in 2 days we recognized the symptoms took her to ER and

> her 2nd episode of metabolic acidosis(with onion gap)ph 7.1 appear,

> went to ICU ran tons of tests, finally the doctors told me they

> couldnt find anything wrong, they suggest me taking her to the mayo

> clinic (first time I heard this name) or UTSA medical hospital, we

> didnt know what to do. A friend refered us to Dr. Canales in El

> Paso,Tx (pediatrician) he accepted the case and he is the one who

> ordered the lab work for Mito, Melas, we still waiting for

> results,every day is hard same sympthoms , my daughter is afraid,

> has anxiety, desperate, tired, frustrated.We as parents looking for

> information seems the only way to help our daughter. Are there

> people in EL Paso, Tx with similar conditions, special hospitals for

> this , is there a special doctor for mito,metabolic, is the mayo

> clinic expensive, does the insurance cover for this clinic, I am

> completly in the dark about this. Reading to the stories help me , I

> know Am not alone and I understand that we are responsibles for

> educate about this , so we can make the right decisions. God bless

> you all. Ale's mom (we are hispanics , I know you would

> understand my writting) I know this is not important.

>

>

>

>

>

>

>

>

>

>

> 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.

>

>

>

>

>

>

[Guest guest]

Hello Caroline,

Could you post or send me the contact info for Dr Scaglia? My brother moved to

Dallas in 1993, then transferred to Oklahoma and for the past year and a half

near Beaumont. He is currently looking for a doctor familiar with mito. My

sister was diagnosed in 1996 by a doctor in Milwaukee and I live near Green Bay.

I, my sister, and son all have MELAS diagnosed by a blood test, my sister also

with a quick muscle biopsy when she went into a two week coma and the blood test

was not back yet from the seizure and coma 2 months before. My nephew also has

now been diagnosed. We all have mild symptoms except my sister had seizures and

a coma in 1994 and in 1996 also. She died in 1996 from the seizures. My mother

died in 1988 from a seizure.

Anyway, my brother more than likely has it also. He is starting to have

problems with overall fatique and his legs hurting. He does not want to get

tested yet for life insurance issues. He is 38 but has only term insurance thru

his job. He is taking Qgel and generic carnitor but wants to find a doctor in

the area who knows something about mito now.

Thanks,

Janet Sample

Re: adult metabolic acidosis-posible mito

Laurie, You are the first one to respond it feels great, thanks for your

advice, understanding and care. Isela

Laurie Fitzgerald

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

Welcome to the group. I think your language is great - better than

mine is at times.

There are mito specialists, but they are few and far between. This

makes it not only hard to travel, but hard to get an appointment. I do

see a mito specialist once a year or so, but my main care is by a

neurologist at the MDA (muscular dystrophy association) clinic. He

wasn't real familiar with mito (8 years ago), but has learned an

amazing amount. You might want to try out an MDA clinic in your area.

They also help out financially with equipment and appointments.

Ask any specific questions and we will do our best to share our

experiences. We are also here when you feel lost and alone.

My son, also, had to leave college because of his mito. He started

having seizures.

Hugs to you and Ale,

laurie

On 3/1/06, Isela

iselamom@...iselamom@...>> wrote:

> I am a desperate mother of 21 year old daughter (Ale) looking for

> help , our story started 2 year ago . Ale was pregnant (3 months)

> when she started with complications 4 visits to ER and everybody

> thought it was related to her pregnancy, everybody was wrong her

> symptoms headache,uncontrollable vertigo,dizzines,tired,

> gastrointestinal , reflux, insomnia, rash,lost appetite,

> nightmares .Finally the worst day of our lives 7/11/04 she was alone

> at home fell a sleep , woke up and fell to the floor, we found her

> (it is hard to remember, emotions , if we only new , we woudnt left

> her alone) she coudnt respond her respiration was hard, call 911 at

> ER a doctor told us she was going to die , it is a long story but at

> the end she lost the baby and after 11 days in ICU we left the

> hospital with comments from everybody this was a miracle, nobody

> toll us what really happen(this was her first episode of metabolic

> acidosis ph 6.7, at that time the only thing we wanted was to help

> our daughter to go back with her life it took months but finally she

> decided to go back to college move to San Tx. UTSA she was

> happy and 2 months ago she started with headaches, posibble urinary

> infection went to doctors no medicines seemed to help, 2 weeks with

> no energy We decided to bring her back to ran some tests,thanks

> God , with in 2 days we recognized the symptoms took her to ER and

> her 2nd episode of metabolic acidosis(with onion gap)ph 7.1 appear,

> went to ICU ran tons of tests, finally the doctors told me they

> couldnt find anything wrong, they suggest me taking her to the mayo

> clinic (first time I heard this name) or UTSA medical hospital, we

> didnt know what to do. A friend refered us to Dr. Canales in El

> Paso,Tx (pediatrician) he accepted the case and he is the one who

> ordered the lab work for Mito, Melas, we still waiting for

> results,every day is hard same sympthoms , my daughter is afraid,

> has anxiety, desperate, tired, frustrated.We as parents looking for

> information seems the only way to help our daughter. Are there

> people in EL Paso, Tx with similar conditions, special hospitals for

> this , is there a special doctor for mito,metabolic, is the mayo

> clinic expensive, does the insurance cover for this clinic, I am

> completly in the dark about this. Reading to the stories help me , I

> know Am not alone and I understand that we are responsibles for

> educate about this , so we can make the right decisions. God bless

> you all. Ale's mom (we are hispanics , I know you would

> understand my writting) I know this is not important.

>

>

>

>

>

>

>

>

>

>

> 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.

>

>

>

>

>

>

[Guest guest]

Janet,

Dr. Scaglia's nurse is Kerri Lamance. Her assistant, Lena handles scheduling.

Her direct line is . They are with the Department of Molecular &

Human Genetics at Baylor College of Medicine. However they work through Texas

Children's Hospital because Dr. Scaglia works primarily with children. I guess,

though, with his research in MELAS studying whole families and their

manifestations are important. I received my diagnosis this past December,

although I have had symptoms for a while (migraines with aura, bipolar, very

mild hearing loss, immense fatigue, unexplained muscle pain, weakness in left

arm/hand, tremors in left hand especially with heavy use, etc.). After the

diagnosis, I had a hearing test, and I have seen an opthamologist, and a

cardiologist. I will be seeing a neurologist this month to get an MRI, and I

will be concluding my heart tests in the beginning of April. I see Dr. Scaglia

as his official patient March 29th, instead of being the person who brings our

other family members to him. The tests that I have completed so far are OK, so

they will serve as baselines for any future tests. The one I'm most concerned

about is the neuro, since some of my problems right now are probably neuro

related. Since Dr. Scaglia deals mostly with pediatrics, he was not able to

help me with adult specialist referrals. However, we are blessed with the Texas

Medical Center here. Texas Children's Hospital is affiliated with St. Luke's

Episcopal Hospital, and it has a satellite hospital here in The Woodlands where

I live. So, I used it's online physicians referral system to find a

cardiologist and neurologist. There were many, so I went through each one's

biography and scrutinized what their specialties (within their specialty) are,

their interests (diseases that they concentrate on in their practice). Also, I

paid attention to if they were affiliated with Baylor College of Medicine (where

Dr. Scaglia is) and to what schools they went to. I was trying to whittle down

my choices to those that maybe were familiar with Mito disorders and/or those

who I didn't have to educate so much (or look at me funny when I explained what

MELAS is). Luckily my research has paid off with my cardiologist. He knew what

mito disorders are. In fact, his first question was " which one do you have? "

How refreshing! We'll see how the neuro goes...

I also have an Internal Medicine doc who I am keeping in the loop as well.

Because of my family's medical history, I have come to find out how important it

is to try to coordinate the medical care as much as possible. My other family

members didn't know they were sick until nearly fatal manifestations arose. So,

I'm trying to go about this in a methodical way so that in the future, if I get

sicker I don't end up with an ignorant doctor looking at me in the ER wondering

what's wrong with me!

Here is some websites that ya'll might be interested in:

Dr Scaglia's info:

http://www.bcm.edu/physicians/index.cfm?fuseaction=directory.physiciandetail&Phy\

sicianID=706http://www.bcm.edu/physicians/index.cfm?fuseaction=directory.physic\

iandetail&PhysicianID=706>

Dr. Scaglia's article on MELAS:

http://www.emedicine.com/ped/topic1406.htmhttp://www.emedicine.com/ped/topic140\

6.htm>

Blessings,

Caroline

>

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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.

>

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[Guest guest]

Thanks Caroline,

I will pass it on to my brother. He has worked for SBC (AT&Tnow) for over 6

years so now has pretty good health insurance coverage. Before he did not have

very good coverage. I was actually surprised at all they did during the

hurricane. They paid the employees for Thursday and Friday before the hurricane

and also the week after. Then they put them and their families and pets up at

the training center apartments in Arlington while the employees worked there for

almost 2 weeks till the facility where he worked in Beaumont was ready. These

apartments even had a physical fitness center and swimming pool. And they

provided buses and tours for the families to do things in Dallas area while the

employee was at work.

Thanks for the info.

Re: adult metabolic acidosis-posible mito

Janet,

Dr. Scaglia's nurse is Kerri Lamance. Her assistant, Lena handles scheduling.

Her direct line is . They are with the Department of Molecular &

Human Genetics at Baylor College of Medicine. However they work through Texas

Children's Hospital because Dr. Scaglia works primarily with children. I guess,

though, with his research in MELAS studying whole families and their

manifestations are important. I received my diagnosis this past December,

although I have had symptoms for a while (migraines with aura, bipolar, very

mild hearing loss, immense fatigue, unexplained muscle pain, weakness in left

arm/hand, tremors in left hand especially with heavy use, etc.). After the

diagnosis, I had a hearing test, and I have seen an opthamologist, and a

cardiologist. I will be seeing a neurologist this month to get an MRI, and I

will be concluding my heart tests in the beginning of April. I see Dr. Scaglia

as his official patient March 29th, instead of being the person who brings our

other family members to him. The tests that I have completed so far are OK, so

they will serve as baselines for any future tests. The one I'm most concerned

about is the neuro, since some of my problems right now are probably neuro

related. Since Dr. Scaglia deals mostly with pediatrics, he was not able to

help me with adult specialist referrals. However, we are blessed with the Texas

Medical Center here. Texas Children's Hospital is affiliated with St. Luke's

Episcopal Hospital, and it has a satellite hospital here in The Woodlands where

I live. So, I used it's online physicians referral system to find a

cardiologist and neurologist. There were many, so I went through each one's

biography and scrutinized what their specialties (within their specialty) are,

their interests (diseases that they concentrate on in their practice). Also, I

paid attention to if they were affiliated with Baylor College of Medicine (where

Dr. Scaglia is) and to what schools they went to. I was trying to whittle down

my choices to those that maybe were familiar with Mito disorders and/or those

who I didn't have to educate so much (or look at me funny when I explained what

MELAS is). Luckily my research has paid off with my cardiologist. He knew what

mito disorders are. In fact, his first question was " which one do you have? "

How refreshing! We'll see how the neuro goes...

I also have an Internal Medicine doc who I am keeping in the loop as well.

Because of my family's medical history, I have come to find out how important it

is to try to coordinate the medical care as much as possible. My other family

members didn't know they were sick until nearly fatal manifestations arose. So,

I'm trying to go about this in a methodical way so that in the future, if I get

sicker I don't end up with an ignorant doctor looking at me in the ER wondering

what's wrong with me!

Here is some websites that ya'll might be interested in:

Dr Scaglia's info:

http://www.bcm.edu/physicians/index.cfm?fuseaction=directory.physiciandetail&Phy\

sicianID=706http://www.bcm.edu/physicians/index.cfm?fuseaction=directory.physic\

iandetail&PhysicianID=706>

Dr. Scaglia's article on MELAS:

http://www.emedicine.com/ped/topic1406.htmhttp://www.emedicine.com/ped/topic140\

6.htm>

Blessings,

Caroline

>

>

> 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.

>

>

>

>

>

>