Newbie

[Guest guest]

I have read leg pains in PG are due to low potassium, have a banana

[Guest guest]

Tracey,

Welcome and congrats on the weight loss! I hope you get your reflux problem

solved soon. I would urge you to do your research about the meds you have to

take and how they effect pregnancy. I have to take meds because of severe

arthritis, psoriasis, and fibromyalgia. I found, after months of suffering

while pregnant, that the drugs I needed to take were very compatible with

pregnancy and considered safe. The information that is provided by the drug

company and the PDR generally always says that you should avoid taking meds

during pregnancy. They say this not because they necessarily because they have

done studies that shows it can harm, they say it to protect themselves legally.

Of course you need to follow the advice of your doc, all I'm saying is that

don't think just because you have to take meds prevents you from being pregnant

or suffering during your pregnancy. I hope that everything works out very soon

for you and you have a beautiful little one on the way soon!

Axelrod

Newbie

Hi. My name is Tracey and I just celebrated my one year anniversary

of my VBG on March 11. I've lost a total of 98.5 pounds. I'm 34 nad

have never been pregnant. My husband and I are looking forward to

becoming pregnant as soon as I work out my acid reflux/heartburn

issue. I never had acid reflux/heartburn before my surgery but since

my surgery I've had to be on prevacid. Obviously I can't get pregnant

if I need to take prevacid every day...But I have an appointment with

a gastroenterologist next month so hopefully we'll be able to figure

something out on that issue.

I read the frequently asked questions that were sent to me when I

joined the group and all I can say is " thank you " - alot of my

questions were on there! I'm really nervous about the whole aspect of

getting pregnant and trying to make sure that I don't gain alot of

weight while making sure that I am eating enough to keep my baby

healthy.

Anyway, I just thought I'd say Hi and introduce myself.

Tracey

[Guest guest]

Tracey,

Welcome and congrats on the weight loss! I hope you get your reflux problem

solved soon. I would urge you to do your research about the meds you have to

take and how they effect pregnancy. I have to take meds because of severe

arthritis, psoriasis, and fibromyalgia. I found, after months of suffering

while pregnant, that the drugs I needed to take were very compatible with

pregnancy and considered safe. The information that is provided by the drug

company and the PDR generally always says that you should avoid taking meds

during pregnancy. They say this not because they necessarily because they have

done studies that shows it can harm, they say it to protect themselves legally.

Of course you need to follow the advice of your doc, all I'm saying is that

don't think just because you have to take meds prevents you from being pregnant

or suffering during your pregnancy. I hope that everything works out very soon

for you and you have a beautiful little one on the way soon!

Axelrod

Newbie

Hi. My name is Tracey and I just celebrated my one year anniversary

of my VBG on March 11. I've lost a total of 98.5 pounds. I'm 34 nad

have never been pregnant. My husband and I are looking forward to

becoming pregnant as soon as I work out my acid reflux/heartburn

issue. I never had acid reflux/heartburn before my surgery but since

my surgery I've had to be on prevacid. Obviously I can't get pregnant

if I need to take prevacid every day...But I have an appointment with

a gastroenterologist next month so hopefully we'll be able to figure

something out on that issue.

I read the frequently asked questions that were sent to me when I

joined the group and all I can say is " thank you " - alot of my

questions were on there! I'm really nervous about the whole aspect of

getting pregnant and trying to make sure that I don't gain alot of

weight while making sure that I am eating enough to keep my baby

healthy.

Anyway, I just thought I'd say Hi and introduce myself.

Tracey

[Guest guest]

lol, welcome Suzanne, this is a good board for asking for information, lots of

good stuff here, I hope that you are able to get things under control, it can be

tough..

Carmen

[alldiabeticinternational] Newbie

Hi

I just joined your group and thankyou listmom for inviting me. I have

been type 1 diabetic for 9 years and still have not got the hang of

it. They say i am a uncontrolable diabetic. Nurses cannot get it

regulated either. Which has caused major problems with my health as

you all know of the complications. We are now experimenting with

different types of insulin, the new one being humilog. So im hoping

that you can be a sounding board for info and bitchiness lol. Thanx

and hope to talk to ya all soon.

suz

[Guest guest]

In a message dated 6/24/2004 5:54:44 AM Pacific Standard Time,

trishjc@... writes:

My name is Trish and I am 56 yrs young.

Hi Trish, welcome! I am Marilyn, and live on the other coast! LOL Between

us we can keep a watch out on this group, right! LOL It is wonderful to have

friends all over the world. I love to hear their daily living challenges and

joys, as they are so entirely different than my little corner of the world.

I am 4 years into this disease, but have not had to go as far as insulin yet.

Hope I can entend my time until I get there. I do not like watching

everything so tightly, hopefully by the time that gets here I will have less of

everything on my mind to take care of. I have a disabled husband, and a 12 year

old

at home. I am 58, 6 kids and 7th grandchild due in sept. We have has the 12

year old almost since birth, she is the daughter on one of my sons. He is

bipolar, unable to care for her, and after 45 foster children, we didn't see it

as much of a stretch to raise one more.

What do you like to do for a hobby or exercise? We like to camp, walk in the

woods, sit by a lake, or anything that takes us out to nature. Have a great

day, hope to see you posting and enjoying the group. Hugs, Marilyn

[Guest guest]

Hello Jackie and welcome to the group. I am so sorry everything has

happened so fast to you. Education is the key to beating this

disease. Life is going to change for you for sure but it is not the

end of it. Once you get this under control you will start feeling

much better. This is a great place to start getting your information.

The stress you are having may be playing a very big part with your

sugar control. Ask away with any question, that is what we all do. We

will do our best to help you.

Faith

> Hi

>

> My name is Jackie, I have just joined your group. Hopefully I will

be

> able to

> figure this out with the more information I can gather.

>

> I am 54 and was diagnosed with Type 11 about 5 weeks ago. My

numbers

> are a

> little different then yours are, I think cause it is Canada stuff,

> but I can

> exchange them for you. When I was diagnosed my blood sugar was 10

> =180. Since

> then I have been on 1500MG of Metformin daily and have gotten my BS

> down to

> between 7-9 = 110-140 daily. I still haven't gotten it quite right

> but I am

> waiting to get into diabetes education, which is kinda slow here. I

> am sure that

> will help too. Seeing I have absolutely no clue what I am doing

> eating wise, it

> is sort of hit and miss here. I do make sure I walk daily, up to 3

> hours a day

> usually.

>

> The problem I have is all the other things that have complicated

> this. I have

> high blood pressure and choloresterol, although with my meds that

has

> come down.

> My kidneys were leaking but I think maybe the meds are helping that

> too.I also

> have been diagnosed with coronary artery disease and am taking yet

> more meds for

> that and wearing a nitro patch daily. I feel like a walking time

bomb

> here.

>

> I also was diagnosed with a cataract and need surgery for that

soon.

> Things keep

> going wrong with me for some reason or another. Last week my left

> foot went to

> sleep and is still sleeping. I have fallen so many times I have

> really damaged

> my ankle and my foot is swollen and black and blue. A few days ago

my

> left hand

> also started to go numb and tingly. I have had xrays done and am

now

> waiting for

> a nerve ending test of some kind.

>

> I am so confused sometimes, I am so scared most of the time, I am

> wiped out

> almost continually, I love walking so much and I know excerise is

> totally

> necessarry but now I can't walk much and am using a cane and ankle

> brace. Is

> all this associated with diabetes, or did diabetes come as a result

> of all the

> rest of this stuff? I went to the Doctor one day for some simple

> blood results

> and was told I was diabetic, my kidneys leaked, I had had a heart

> attack and

> life was going to change forever for me.

>

> I find all of this a little overwhelming especially the prospect of

> heart

> surgery. Just what effect is all of this having on my diabetes I

> wonder.

>

> I guess thats about it for me for now. I could probably go on but I

> would likely

> just confuse myself in the end anyway. I am glad I found this

place ,

> maybe some

> of my hundreds of questions will be answered.

>

> Jackie

[Guest guest]

In a message dated 8/15/2004 1:38:48 PM Pacific Standard Time,

ladyj_ca_2000@... writes:

I guess thats about it for me for now. I could probably go on but I

would likely

just confuse myself in the end anyway. I am glad I found this place ,

maybe some

of my hundreds of questions will be answered.

Jackie

>>>>>Hi Jackie, boy you have your hands full! Just the diabetes diagnosis is

scary enough! After we get informed about it, it is not nearly so scary.

There is much good info available to us here. You are young to have so much

going wrong at once. Your nembers are looking pretty good now, you are on track

;-) The other issues may or may not be related. It would take a medical

license to determine that! Know you are being prayed for, wonderful things come

of this ;-) I like your positive outlook, it really helps. Hugs, Marilyn

[Guest guest]

Hi Jackie

I am also a fellow newbie. I've had diabetes II for a

couple years, but have been in denial for most of that

time. I just knew it would go away as quickly as it

appeared. Like you said, one day everything is fine

and the next day, your entire world has changed.

I got my wake up call when I got the results of that

test (pardon me, but I don't even know what you call

all these things yet) that gives you an average bs

over a 3 month period. My average was 240. Now I may

not be the brightest rock on the beach, but I don't

even want to know what the high mark might have been.

For the last couple of weeks I've been eating the

right stuff which means all that stuff that may be OK,

but not the great stuff you used to eat. Both my

hubby and I have sweet tooths and I used to pander to

them by baking great things. I still find it hard to

believe that we'll never be able to eat those goodies

like we used to do. Anyway, by eating OK, my blood

sugar has been running between 80 and 165 except for

one time it was 225. It bottomed out on my at 55 one

time and that scared me. I detest this disease. On

top of everything else, my fingers are sore from all

the blood letting. I got some lancets with a higher

number. They don't hurt quit as badly as those spear

chuckers they first gave me. At least I'm learning a

little bit at a time.

I think you'll like this list. I have enjoyed it in

the short time I've been a member.

You take care.

J

--- Jackie ladyj_ca_2000@...> wrote:

> Hi

>

> My name is Jackie, I have just joined your group.

[Guest guest]

Hi Joyce. you can get a monitor to test on your arms. It is a big

relief not to have to have your finger tips sore. I am glad your

denial state is over and you are on your way to better health. I hate

this disease to. You are not alone anymore we are here for you.

Beth

> Hi Jackie

>

> I am also a fellow newbie. I've had diabetes II for a

> couple years, but have been in denial for most of that

> time. I just knew it would go away as quickly as it

> appeared. Like you said, one day everything is fine

> and the next day, your entire world has changed.

>

[Guest guest]

, welcome to our group. I'm pretty sure that even at 15 months old your

child could get really good correction with the Ponseti method. From your

description your current doctor is not using the method and at this current rate

of failure it won't take much longer before he ruins the foot completely.

(been there done that)

I would take him immediately to an experienced Ponseti doctor. He may require

one more heel-cord lengthening, but that's rather minor. Lots of parents here I

believe use Dr. Dobbs.

Stay in touch, we'll help you where ever we can!

s.

newbie

Hi,

I was given your web-site from a person on the other club foot group.

My son, , is 15 months old and has club feet. He also has

numerous other anomolies. When he was born he was transferred to

Cardinal Glennon in St. Louis. We were told he has moderate

bilateral club feet. He was casted for the first couple of months.

They were soft casts that went to his thighs. In the cast the feet

were manipulated and put into the correct position. Then we were

told he needed a small release. The heel cord and another tendon

was released. After surgery he kicked out of a cast daily. The

doctor had never seen this before so we went directly to AFOs.

was able to slip out of the AFOs as well. So we tried DAFOs

then clam shell braces...these still didn't work. Finally, 6 months

after surgery we found the open toed shoes that you can attach the

bar to. This fit him and stayed on. However, after using nothing

for 6 months his right foot became tight and you cannot put it into

neutral position. So the doctor wants to schedule him for another

surgery to release the heel cord again and a few more tendons.

I was told about the Ponseti method by members on the other club

foot group. I called Chilren's Hospital in St. Louis and left a

message for Dr. Dobbs who specializes in this. I'm hoping & praying

that will be a candidate for this. I don't know if it's too

late though.

Does anybody have a smiliar story?

Thank you,

Proud Mom to -15 months old, microcephaly, bilateral ptosis

(repaired 1/04), GERD (and associated eating challenges), bilateral

club feet, left kidney: hydronephrosis due to Grade V reflux, right

kidney: low functioning due to cysts on upper 20%, undescended

testes (corrected 9/04), low muscle tone, global delays, undiagnosed

syndrome...

[Guest guest]

,

You will not be disappointed if you seek a second opinion from Dr Dobbs. I have

heard so many success stories from families here who have switched to him, some

of those late in treatment. I can guarantee you that he is the top clubfoot doc

in your area. In addition, if you see him at the Shriners Hospital, care is

provided free of charge.

In response to some of the questions you posted on the other board.

My son, Jonah, is 16 months old. He just moved into the size 2 Markell

shoes--with lots of room to grow. It doesn't sound to me like your son's feet

are particularly small(for clubfeet, that is). What are called atypical

clubfeet are sometimes described as " fat and stubby " , that's possibility in

your case. For reassurance, Dr Dobbs is one of the leaders in treating these

feet.

Jonah has always slept best on his tummy. The FAB(DBB) hasn't changed a thing.

Please let us know if there are other things we can help you with. This group

is amazing not only for the scope and breadth of its experience, but also for

its compassion.

We now live in California, but my husband grew up in Missouri and is just

thrilled that the Cardinals made it to the World Series...

My family joins me in wishing you and your family all the best,

Naomi

The Family

Naomi Hannah Jonah(06/20/03, bilateral clubfoot, FAB 16/7)

jaymz3372 ludwig33@...> wrote:

Hi,

I was given your web-site from a person on the other club foot group.

My son, , is 15 months old and has club feet. He also has

numerous other anomolies. When he was born he was transferred to

Cardinal Glennon in St. Louis. We were told he has moderate

bilateral club feet. He was casted for the first couple of months.

They were soft casts that went to his thighs. In the cast the feet

were manipulated and put into the correct position. Then we were

told he needed a small release. The heel cord and another tendon

was released. After surgery he kicked out of a cast daily. The

doctor had never seen this before so we went directly to AFOs.

was able to slip out of the AFOs as well. So we tried DAFOs

then clam shell braces...these still didn't work. Finally, 6 months

after surgery we found the open toed shoes that you can attach the

bar to. This fit him and stayed on. However, after using nothing

for 6 months his right foot became tight and you cannot put it into

neutral position. So the doctor wants to schedule him for another

surgery to release the heel cord again and a few more tendons.

I was told about the Ponseti method by members on the other club

foot group. I called Chilren's Hospital in St. Louis and left a

message for Dr. Dobbs who specializes in this. I'm hoping & praying

that will be a candidate for this. I don't know if it's too

late though.

Does anybody have a smiliar story?

Thank you,

Proud Mom to -15 months old, microcephaly, bilateral ptosis

(repaired 1/04), GERD (and associated eating challenges), bilateral

club feet, left kidney: hydronephrosis due to Grade V reflux, right

kidney: low functioning due to cysts on upper 20%, undescended

testes (corrected 9/04), low muscle tone, global delays, undiagnosed

syndrome...

[Guest guest]

,

Your story sounds kinda familiar to ours. My son Tyler is now 21

months old and has bilateral atypical cf. We went through 18 months

of surgeries, castings, afos...ect. Til finally we found Dr. Dobbs.

He has saved my son's feet. He worked miracles! He is also at

Shriner's in St.Louis that is where Tyler sees him and it helps with

the cost of the medical treatment as well as the braces. He is a

wonderful doctor. My son had been out of his brace for over a month

and he had lost correction as well. Dr. Dobbs did 3 more castings

then a tendon release and Tyler's feet look wonderful. He is now

wearing a brace that Dr. Dobbs and the orthotists at Shriner's

designed. I hope that all works out well with you and I think that

your son would be in good hands with Dr. Dobbs. Good Luck and let us

know how everything is going and if you have any questions don't

hesitate to ask.

Tyler's mommy

bilateral atypical cf 1/14/03

Dobbs brace 9/9/04 16/7

4/12/94 non cf

5/24/95 non cf

>

>

> Hi,

> I was given your web-site from a person on the other club foot

group.

> My son, , is 15 months old and has club feet. He also has

> numerous other anomolies. When he was born he was transferred to

> Cardinal Glennon in St. Louis. We were told he has moderate

> bilateral club feet. He was casted for the first couple of

months.

> They were soft casts that went to his thighs. In the cast the feet

> were manipulated and put into the correct position. Then we were

> told he needed a small release. The heel cord and another tendon

> was released. After surgery he kicked out of a cast daily. The

> doctor had never seen this before so we went directly to AFOs.

> was able to slip out of the AFOs as well. So we tried DAFOs

> then clam shell braces...these still didn't work. Finally, 6

months

> after surgery we found the open toed shoes that you can attach the

> bar to. This fit him and stayed on. However, after using nothing

> for 6 months his right foot became tight and you cannot put it into

> neutral position. So the doctor wants to schedule him for another

> surgery to release the heel cord again and a few more tendons.

> I was told about the Ponseti method by members on the other club

> foot group. I called Chilren's Hospital in St. Louis and left a

> message for Dr. Dobbs who specializes in this. I'm hoping &

praying

> that will be a candidate for this. I don't know if it's too

> late though.

> Does anybody have a smiliar story?

> Thank you,

>

> Proud Mom to -15 months old, microcephaly, bilateral ptosis

> (repaired 1/04), GERD (and associated eating challenges), bilateral

> club feet, left kidney: hydronephrosis due to Grade V reflux,

right

> kidney: low functioning due to cysts on upper 20%, undescended

> testes (corrected 9/04), low muscle tone, global delays,

undiagnosed

> syndrome...

[Guest guest]

I also should add that Tyler got one of his casts off with his first

ortho and he would get out of his afos and braces, but since seeing

Dr.Dobbs we have not had any of these problems.

Tyler's mommy

bilateral atypical cf 1/14/03

Dobbs brace 9/9/04 16/7

4/12/94 non cf

5/24/95 non cf

> >

> >

> > Hi,

> > I was given your web-site from a person on the other club foot

> group.

> > My son, , is 15 months old and has club feet. He also has

> > numerous other anomolies. When he was born he was transferred to

> > Cardinal Glennon in St. Louis. We were told he has moderate

> > bilateral club feet. He was casted for the first couple of

> months.

> > They were soft casts that went to his thighs. In the cast the

feet

> > were manipulated and put into the correct position. Then we were

> > told he needed a small release. The heel cord and another tendon

> > was released. After surgery he kicked out of a cast daily. The

> > doctor had never seen this before so we went directly to AFOs.

> > was able to slip out of the AFOs as well. So we tried

DAFOs

> > then clam shell braces...these still didn't work. Finally, 6

> months

> > after surgery we found the open toed shoes that you can attach

the

> > bar to. This fit him and stayed on. However, after using

nothing

> > for 6 months his right foot became tight and you cannot put it

into

> > neutral position. So the doctor wants to schedule him for

another

> > surgery to release the heel cord again and a few more tendons.

> > I was told about the Ponseti method by members on the other club

> > foot group. I called Chilren's Hospital in St. Louis and left a

> > message for Dr. Dobbs who specializes in this. I'm hoping &

> praying

> > that will be a candidate for this. I don't know if it's

too

> > late though.

> > Does anybody have a smiliar story?

> > Thank you,

> >

> > Proud Mom to -15 months old, microcephaly, bilateral ptosis

> > (repaired 1/04), GERD (and associated eating challenges),

bilateral

> > club feet, left kidney: hydronephrosis due to Grade V reflux,

> right

> > kidney: low functioning due to cysts on upper 20%, undescended

> > testes (corrected 9/04), low muscle tone, global delays,

> undiagnosed

> > syndrome...

[Guest guest]

I also should add that Tyler got one of his casts off with his first

ortho and he would get out of his afos and braces, but since seeing

Dr.Dobbs we have not had any of these problems.

Tyler's mommy

bilateral atypical cf 1/14/03

Dobbs brace 9/9/04 16/7

4/12/94 non cf

5/24/95 non cf

> >

> >

> > Hi,

> > I was given your web-site from a person on the other club foot

> group.

> > My son, , is 15 months old and has club feet. He also has

> > numerous other anomolies. When he was born he was transferred to

> > Cardinal Glennon in St. Louis. We were told he has moderate

> > bilateral club feet. He was casted for the first couple of

> months.

> > They were soft casts that went to his thighs. In the cast the

feet

> > were manipulated and put into the correct position. Then we were

> > told he needed a small release. The heel cord and another tendon

> > was released. After surgery he kicked out of a cast daily. The

> > doctor had never seen this before so we went directly to AFOs.

> > was able to slip out of the AFOs as well. So we tried

DAFOs

> > then clam shell braces...these still didn't work. Finally, 6

> months

> > after surgery we found the open toed shoes that you can attach

the

> > bar to. This fit him and stayed on. However, after using

nothing

> > for 6 months his right foot became tight and you cannot put it

into

> > neutral position. So the doctor wants to schedule him for

another

> > surgery to release the heel cord again and a few more tendons.

> > I was told about the Ponseti method by members on the other club

> > foot group. I called Chilren's Hospital in St. Louis and left a

> > message for Dr. Dobbs who specializes in this. I'm hoping &

> praying

> > that will be a candidate for this. I don't know if it's

too

> > late though.

> > Does anybody have a smiliar story?

> > Thank you,

> >

> > Proud Mom to -15 months old, microcephaly, bilateral ptosis

> > (repaired 1/04), GERD (and associated eating challenges),

bilateral

> > club feet, left kidney: hydronephrosis due to Grade V reflux,

> right

> > kidney: low functioning due to cysts on upper 20%, undescended

> > testes (corrected 9/04), low muscle tone, global delays,

> undiagnosed

> > syndrome...

[Guest guest]

He is now

> wearing a brace that Dr. Dobbs and the orthotists at Shriner's

> designed. I hope that all works out well with you and I think that

> your son would be in good hands with Dr. Dobbs. Good Luck and let

us

> know how everything is going and if you have any questions don't

> hesitate to ask.

>

>

> Tyler's mommy

> bilateral atypical cf 1/14/03

> Dobbs brace 9/9/04 16/7

> 4/12/94 non cf

> 5/24/95 non cf

,

Can you tell me about the brace? My Shriner doctor mentioned it to

me, but didn't have one to show me. Does Dr. Ponseti approve? Is it

easier to deal with than the shoes and bar?

Thanks,

[Guest guest]

Kim

Welcome to the group. I hope we can answer some of your questions and give

you support. This is a great group of people.

laurie

>

> Reply-To:

> Date: Tue, 01 Mar 2005 05:10:21 -0000

> To:

> Subject: 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.

>

>

[Guest guest]

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

>

[Guest guest]

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

> >

>

>

[Guest guest]

--- Hi Kim, Welcome to the list! Also, feel free to vent

emotionally. this is a wonderful and very suppotive bunch. Like

others here, I am not diagnosed with mito...yet. My first biopsy

showed abnormalities, but not enough for a diagnosis. Someday I will

have a fresh biopsy done. It will be nice to get to know you.

Dawn A

In , " klaga5 " wrote:

>

>

> 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

[Guest guest]

---Kim were any of your biopsies done fresh? How long ago was your

first biopsy. I was wondering if progression of the disease makes a

difference in the biopsy results?

Dawn A

In , " klaga5 " wrote:

>

>

> 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

> > >

> >

> >

[Guest guest]

Thanks Dawn,

Right now, I'm just sick of doctors and no specific diagnosis, and

no treatment. Although I just got off the phone with the

pulminologist and agreed to try c-pap...yuck.

Kim

> >

> >

> > 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

[Guest guest]

My first biopsy was in the fall. It was done and tested at the same

place. I assume it was fresh. It was from my shoulder and showed

signs of damage, and PAS positive.

The second, from my thigh was done and tested at the same place in

december, then sent out to another lab for further testing. That's

what I'm waiting for now. He said they're checking for the more

rare forms of glycogen storage disease. I wonder if they're ruled

out, if that means it's mito.

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

> > > >

> > >

> > >

[Guest guest]

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

> >

>

>

[Guest guest]

Hi Barbara,

Yep, I'm the same 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

> > >

> >

> >

[Guest guest]

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

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