New here

[Guest guest]

welcome , I hope we can help you. This a great group to be in.

again welcome

, mom to Colby 12, COX IV, LCHAD

[Guest guest]

I dont know what to say except I'm sure you are in the right spot to find some help. Unfortunately I can only say I her for you if you need to talk. It's scarey and devastating to go through what you are going through. God bless you and your daughter. I hope someone can help you here.

With Lots of hugs to you, Robin

[Guest guest]

I dont know what to say except I'm sure you are in the right spot to find some help. Unfortunately I can only say I her for you if you need to talk. It's scarey and devastating to go through what you are going through. God bless you and your daughter. I hope someone can help you here.

With Lots of hugs to you, Robin

[Guest guest]

,

Welcome to the group. You will get a lot of support here.

What kind of treatment do you get for her hyperglycemia? Do you know the conversion for the numbers you gave?

What causes her hyperglycemia?

No hypoglycemia???

My son is prone to both hypo and hyperglycemia? He is 3 as well. We do not have a diagnosis for him yet. Still testing.

When you say closed spinabifida, what does that mean. Does that mean they surgically closed it?

Caden has spina bifida occulta. No symptoms at all.

What kind of mito do they suspect she has?

I hope you find this group helpful. I am sure you will.

I don't know how much I can help, as we still don't even have a diagnosis for him yet.

Take care,

Krystena smom to Caden 3-possible GAII and/or Mito.Warren 7 untested 9 untested

new here

Hi my name is and i have a three year old named hailee and we are in the process of getting a mito diagnosis, i feel so lost and confused with this new diagnosis we have been thru so much in the last three years.Hailee has a rare brain disorder, seizures, vds,closed spinabifida,genetic abnormalities,asthma,hypothyrodisim, no growth hormone, a disorder that affects the mylan sheths of her neurons, she has ulcers,reflux,severe delayed gastric emptying, she has quit eating by mouth and is now totally g tube feed, she just got a portacath put in this last week, she has protein defficancys and hyperglycmic. Hailee goes thru these periods were she dosnt eat,drink,all she does is sleep for 18hours at a time, when you do get her up its like shes drunk, her glucose during these periods runs betweel 11 being her lowest and 30. I just dont know what to do, or if we are even looking in the right direction if anyone has any ideas i would appreciate itthanks lost in AZ Hailees momPlease contact mito-owner with any problems or questions.

[Guest guest]

,

Welcome to the group. You will get a lot of support here.

What kind of treatment do you get for her hyperglycemia? Do you know the conversion for the numbers you gave?

What causes her hyperglycemia?

No hypoglycemia???

My son is prone to both hypo and hyperglycemia? He is 3 as well. We do not have a diagnosis for him yet. Still testing.

When you say closed spinabifida, what does that mean. Does that mean they surgically closed it?

Caden has spina bifida occulta. No symptoms at all.

What kind of mito do they suspect she has?

I hope you find this group helpful. I am sure you will.

I don't know how much I can help, as we still don't even have a diagnosis for him yet.

Take care,

Krystena smom to Caden 3-possible GAII and/or Mito.Warren 7 untested 9 untested

new here

Hi my name is and i have a three year old named hailee and we are in the process of getting a mito diagnosis, i feel so lost and confused with this new diagnosis we have been thru so much in the last three years.Hailee has a rare brain disorder, seizures, vds,closed spinabifida,genetic abnormalities,asthma,hypothyrodisim, no growth hormone, a disorder that affects the mylan sheths of her neurons, she has ulcers,reflux,severe delayed gastric emptying, she has quit eating by mouth and is now totally g tube feed, she just got a portacath put in this last week, she has protein defficancys and hyperglycmic. Hailee goes thru these periods were she dosnt eat,drink,all she does is sleep for 18hours at a time, when you do get her up its like shes drunk, her glucose during these periods runs betweel 11 being her lowest and 30. I just dont know what to do, or if we are even looking in the right direction if anyone has any ideas i would appreciate itthanks lost in AZ Hailees momPlease contact mito-owner with any problems or questions.

[Guest guest]

,

Welcome to the group. You will get a lot of support here.

What kind of treatment do you get for her hyperglycemia? Do you know the conversion for the numbers you gave?

What causes her hyperglycemia?

No hypoglycemia???

My son is prone to both hypo and hyperglycemia? He is 3 as well. We do not have a diagnosis for him yet. Still testing.

When you say closed spinabifida, what does that mean. Does that mean they surgically closed it?

Caden has spina bifida occulta. No symptoms at all.

What kind of mito do they suspect she has?

I hope you find this group helpful. I am sure you will.

I don't know how much I can help, as we still don't even have a diagnosis for him yet.

Take care,

Krystena smom to Caden 3-possible GAII and/or Mito.Warren 7 untested 9 untested

new here

Hi my name is and i have a three year old named hailee and we are in the process of getting a mito diagnosis, i feel so lost and confused with this new diagnosis we have been thru so much in the last three years.Hailee has a rare brain disorder, seizures, vds,closed spinabifida,genetic abnormalities,asthma,hypothyrodisim, no growth hormone, a disorder that affects the mylan sheths of her neurons, she has ulcers,reflux,severe delayed gastric emptying, she has quit eating by mouth and is now totally g tube feed, she just got a portacath put in this last week, she has protein defficancys and hyperglycmic. Hailee goes thru these periods were she dosnt eat,drink,all she does is sleep for 18hours at a time, when you do get her up its like shes drunk, her glucose during these periods runs betweel 11 being her lowest and 30. I just dont know what to do, or if we are even looking in the right direction if anyone has any ideas i would appreciate itthanks lost in AZ Hailees momPlease contact mito-owner with any problems or questions.

[Guest guest]

welcme to the group, melissa! i was new about a month ago ( even though my daughter was diagnosed 7 years ago---it took me awhile to join a group!)

the people here have been of great help and are wonderful listeners along with being great recources. god bless, mary

haileesangels wrote: Hi my name is and i have a three year old named hailee and we are in the process of getting a mito diagnosis, i feel so lost and confused with this new diagnosis we have been thru so much in the last three years.Hailee has a rare brain disorder, seizures, vds,closed spinabifida,genetic abnormalities,asthma,hypothyrodisim, no growth hormone, a disorder that affects the mylan sheths of her neurons, she has ulcers,reflux,severe delayed gastric emptying, she has quit eating by mouth and is now totally g tube feed, she just got a portacath put in this last week, she has protein defficancys and hyperglycmic. Hailee goes thru these periods were she dosnt eat,drink,all she does is sleep for 18hours at a time, when you do get her up its like shes drunk, her glucose during these periods runs betweel 11 being her lowest and 30. I just dont know what to do, or if we are even looking in the right direction if anyone has any ideas i would appreciate itthanks lost in AZ Hailees mom

[Guest guest]

hI Liz,

You asked if dizzyness, loss of memory, balance, fatigue were symptoms of NS. The answer is yes. I hope that your pulm will refer you to a neurologist and immunologist so they can work with the systemic stuff that comes up around this.

Let us know how we can help.

Tracie

[Guest guest]

hI Liz,

You asked if dizzyness, loss of memory, balance, fatigue were symptoms of NS. The answer is yes. I hope that your pulm will refer you to a neurologist and immunologist so they can work with the systemic stuff that comes up around this.

Let us know how we can help.

Tracie

[Guest guest]

,

Hello! It's good to see you post-- I can't imagine how hard it is to translate our english into other languages. You do very well!

I hope that we see more of you online-- it has been awhile since you've posted. Take good care of yourself.

Hugs,

Tracie

[Guest guest]

Hi Christie,

welcome to our family of sarcoidians, or sarcoidanites, or whatever you want to call us. I hope you've read the article on NS--at http://www.elderwyn.com/neurosarcoidosis/

This article gives you a tremondous amount of information on NS. There are multiple ways to treat this, and hopefully put it into remission. Prednisone is the first choice. Then there are immunosuppressants/immunomodulators like Imuran, Plaquenil, Methotrexate. These drugs reduce the inflammation of the sarcoidosis, and also lower your immune system so that it stops attacking itself.

Are you having just head/brain stuff, or do you have pulmonary sarcoidosis (granulomas in your lungs and lymphs), systemic (muscles, ligaments, blood). The treatment is the same in all cases- but it may take a combination of pred and imuran, or pred and Methotrexate, or Imuran and Plaquenil, etc.

Other drugs are listed at the website.

What can you expect? I think the first thing to expect is that you will need to be started on something to get the inflammation down. More than likely prednisone. Prednisone tends to make you retain fluids, so you will gain weight rapidally. You will plateau, usually 20-30 pounds heavier.

For many of us, we started with pulmonary sarcoidosis, and were put on Pred, went into remission, only to have it come back a few years later as systemic and NS.

For me, I have lost the ability to do multi-tasking, problem solving, reasoning, personality changes, all frontal lobe stuff- short term memory is a major problem. Filling out forms is a major problem. If someone asks me where want to have lunch, I can't answer, but if I can say lets meet at xyz, then i'm ok.

With my lungs, liver, heart involvement, as well as every lymph node in my body, the exhaustion and fatigue are huge issues. Somedays I get up, get my shower and need to take a nap. I have some 7th nerve palsy (Bells), and even though the inner ear structure is intact, the message to my brain to "hear" is compromised.

I know this is all overwhelming right now. With the proper treatment(and it needs to be agressive when this hits our brains) we can go into remission. Stressful situations are probably our worst enemy because they naturally lower the immune system, letting in other opportunistic infections (OI) and then we end up back in sarc flare.

The most important thing is to listen to your body. If you need rest, rest. Eat a healthy diet and do what you can to exercise, both your brain and your body. (For me I play "tumblebees", a game where the letters fall down and you have to spell words for points. Whatever works for you.

Let us know how we can help, no questions are to dumb to ask, vent when you need to. We hold hearts, hands, and each other thru this disease.

With compassion,

Tracie

Moderator

[Guest guest]

> Hi. I was a member a while ago but I left because people were

> fighting. I came back because I finally got my date!!! It will be

on

> July 28th. This is all so real now and I am both excited and

nervous!

> I can't reall excercize right now because of my toe but I have been

> doing the protein and vitamins. I have lost about 15 pounds since

> January and I need to lose 8 more before the 28th of July.I finally

> found a pro complex that I can tolerate too...vanilla. Does anyone

of

> words of advice? I am all ears!

>

> 364

> 30 years old

[Guest guest]

> Hi. I was a member a while ago but I left because people were

> fighting. I came back because I finally got my date!!! It will be

on

> July 28th. This is all so real now and I am both excited and

nervous!

> I can't reall excercize right now because of my toe but I have been

> doing the protein and vitamins. I have lost about 15 pounds since

> January and I need to lose 8 more before the 28th of July.I finally

> found a pro complex that I can tolerate too...vanilla. Does anyone

of

> words of advice? I am all ears!

>

> 364

> 30 years old

[Guest guest]

Hi ....

I can't offer much assistance regarding the pro complex because I

just started out but I wanted to say congrats on your date. I've

only been here a couple of weeks and I haven't seen any fighting just

good solid advice and a lot of caring individuals. I hope you stick

around and let us know how things are going.

Gordy

> Hi. I was a member a while ago but I left because people were

> fighting. I came back because I finally got my date!!! It will be

on

> July 28th. This is all so real now and I am both excited and

nervous!

> I can't reall excercize right now because of my toe but I have been

> doing the protein and vitamins. I have lost about 15 pounds since

> January and I need to lose 8 more before the 28th of July.I finally

> found a pro complex that I can tolerate too...vanilla. Does anyone

of

> words of advice? I am all ears!

>

> 364

> 30 years old

[Guest guest]

Hi ,

Welcome back!! Congrats on getting your date.

As for advise . . . I'd say exercise, even though you can't do it on

your feet. When I was pre-op, I depended heavily on my crutches and

couldn't exercise like most folks. Nonetheless, I did exercise - I did

seated aerobics (kinda like " Chair Dancing " but that particular video is

awful) and exercised my lungs with a spirometer. I am convinced that

increasing my lung strength prior to surgery made a significant

difference in my recovery.

Also, start attending an in-person support group, if you can find one in

your area.

These last few weeks before your surgery are also a great time to get

your pantry set up for your post-op life. Time to get rid of anything

that shouldn't be there and add in the things you will likely be eating

for a while.

I can't stand any Pro Complex flavor that I've tried. Does your program

specify Pro Complex or does it just say to use a whey-based protein?

The Kaiser Richmond program where I had my surgery discourages the use

of shakes and insists that using them will inhibit weight loss - so I

shouldn't know anything about protein shakes. Nonetheless, Sci-Fit

Coconut Cream Pie flavor and Whey Gourmet Arctic Frappacino are my

favorites. ;-p

Please, ask any questions that come to mind and express any concerns or

fears. We are here to help.

I look forward to hearing from you as you progress in your journey.

All the best,

Kay

in San Leandro

open RNY 12/1/03

wrote:

> Hi. I was a member a while ago but I left because people were

> fighting. I came back because I finally got my date!!! It will be on

> July 28th. This is all so real now and I am both excited and nervous!

> I can't reall excercize right now because of my toe but I have been

> doing the protein and vitamins. I have lost about 15 pounds since

> January and I need to lose 8 more before the 28th of July.I finally

> found a pro complex that I can tolerate too...vanilla. Does anyone of

> words of advice? I am all ears!

>

> 364

> 30 years old

[Guest guest]

Where is your surgery, ? And your surgeon? If you go to the same facility as some others on this list (which is likely) we can offer some information. Also check the "files" section of this yahoogroup. There is some great stuff there.

I hear post #817 is a keeper. ;-)

Laurie W.

new here

Hi. I was a member a while ago but I left because people were fighting. I came back because I finally got my date!!! It will be on July 28th. This is all so real now and I am both excited and nervous! I can't reall excercize right now because of my toe but I have been doing the protein and vitamins. I have lost about 15 pounds since January and I need to lose 8 more before the 28th of July.I finally found a pro complex that I can tolerate too...vanilla. Does anyone of words of advice? I am all ears!36430 years old

[Guest guest]

Hi ,

Congratulations on getting your date. I will also be having my WLS on July

28. Dr. Fisher n Richmond will be

doing my WLS. I have been seeing Dr. Baggs but will be meeting Dr. Fisher

tomorrow. I switched to get an

earlier date. Who is your doctor

and where will you have your surgery done? I know what you mean by being both excited and nervous. I feel the same way. I keep telling myself that everything

will be fine and there is nothing to worry about.

Again congratulations!!!!

Pre-op

317

52

years old

new here

Hi. I was a member a while ago but I left because people were

fighting. I came back because I finally got my date!!! It will be on

July 28th. This is all so real now and I am both excited and nervous!

I can't reall excercize right now because of my toe but I have been

doing the protein and vitamins. I have lost about 15 pounds since

January and I need to lose 8 more before the 28th of July.I finally

found a pro complex that I can tolerate too...vanilla. Does anyone of

words of advice? I am all ears!

364

30 years old

[Guest guest]

Thanks for the info. He says he will do Lap unless he has trouble and

then he will have to do open. I am hoping that losing weight will

make it easier for him to do lap.

> > Where is your surgery, ? And your surgeon? If you go to

the

> same facility as some others on this list (which is likely) we

can

> offer some information. Also check the " files " section of this

> yahoogroup. There is some great stuff there.

> >

> > I hear post #817 is a keeper. ;-)

> >

> > Laurie W.

> >

> > new here

> >

> >

> > Hi. I was a member a while ago but I left because people were

> > fighting. I came back because I finally got my date!!! It

will be

> on

> > July 28th. This is all so real now and I am both excited and

> nervous!

> > I can't reall excercize right now because of my toe but I

have

> been

> > doing the protein and vitamins. I have lost about 15 pounds

since

> > January and I need to lose 8 more before the 28th of July.I

> finally

> > found a pro complex that I can tolerate too...vanilla. Does

> anyone of

> > words of advice? I am all ears!

> >

> > 364

> > 30 years old

> >

> >

> >

[Guest guest]

Thanks for the info. He says he will do Lap unless he has trouble and

then he will have to do open. I am hoping that losing weight will

make it easier for him to do lap.

> > Where is your surgery, ? And your surgeon? If you go to

the

> same facility as some others on this list (which is likely) we

can

> offer some information. Also check the " files " section of this

> yahoogroup. There is some great stuff there.

> >

> > I hear post #817 is a keeper. ;-)

> >

> > Laurie W.

> >

> > new here

> >

> >

> > Hi. I was a member a while ago but I left because people were

> > fighting. I came back because I finally got my date!!! It

will be

> on

> > July 28th. This is all so real now and I am both excited and

> nervous!

> > I can't reall excercize right now because of my toe but I

have

> been

> > doing the protein and vitamins. I have lost about 15 pounds

since

> > January and I need to lose 8 more before the 28th of July.I

> finally

> > found a pro complex that I can tolerate too...vanilla. Does

> anyone of

> > words of advice? I am all ears!

> >

> > 364

> > 30 years old

> >

> >

> >

[Guest guest]

,

Congratulations on getting your surgery date! Your date is 1 month after mine at Richmond. I drink Pro-Blend Chocolate and have for several months. It has helped me shed some pounds and I think it is helping me keep the weight off.

Good luck.

Carol wrote:

Hi. I was a member a while ago but I left because people were fighting. I came back because I finally got my date!!! It will be on July 28th. This is all so real now and I am both excited and nervous! I can't reall excercize right now because of my toe but I have been doing the protein and vitamins. I have lost about 15 pounds since January and I need to lose 8 more before the 28th of July.I finally found a pro complex that I can tolerate too...vanilla. Does anyone of words of advice? I am all ears!36430 years old

[Guest guest]

,

Congratulations on getting your surgery date! Your date is 1 month after mine at Richmond. I drink Pro-Blend Chocolate and have for several months. It has helped me shed some pounds and I think it is helping me keep the weight off.

Good luck.

Carol wrote:

Hi. I was a member a while ago but I left because people were fighting. I came back because I finally got my date!!! It will be on July 28th. This is all so real now and I am both excited and nervous! I can't reall excercize right now because of my toe but I have been doing the protein and vitamins. I have lost about 15 pounds since January and I need to lose 8 more before the 28th of July.I finally found a pro complex that I can tolerate too...vanilla. Does anyone of words of advice? I am all ears!36430 years old

[Guest guest]

Hi Heidi,

I am new too... welcome to the group

Are you from Orange County?

I was told by the orange county appt center that Kaiser no longer

requires you to see a dietitian or get a phyc evail. I assume its

cause Pacific Bariactric has you see one too.

I am finding that alot of PCP's arent up to speed on Kaiser policy

sometimes. Your's may not know you dont have to go through those

steps anymore so he made an appt 3 months later in order for you to

get all the other stuff done.

Hugs,

Kym

> Hi, I just wanted to introduce myself.

>

> My name is Heidi and I am in the early stages of going for

approval.

> I meet the criteria, BMI=54, so I don't think it will be too hard

to

> get but...here is my problem.

>

> The PCP said to come back in 3 months (but sent me to nutritionist)

> but the nutritionist said to do the submittal now, only she said

she

> doesn't do the submitting.

>

> I was wondering if anyone out there had a VERY supportive PCP in

the

> ez/Walnut Creek offices? I will change PCP's (yet again) if

I

> need to in order to get the submittal done in a more timely manner.

>

> Thanks ahead of time!

[Guest guest]

Hi Heidi,

I am new too... welcome to the group

Are you from Orange County?

I was told by the orange county appt center that Kaiser no longer

requires you to see a dietitian or get a phyc evail. I assume its

cause Pacific Bariactric has you see one too.

I am finding that alot of PCP's arent up to speed on Kaiser policy

sometimes. Your's may not know you dont have to go through those

steps anymore so he made an appt 3 months later in order for you to

get all the other stuff done.

Hugs,

Kym

> Hi, I just wanted to introduce myself.

>

> My name is Heidi and I am in the early stages of going for

approval.

> I meet the criteria, BMI=54, so I don't think it will be too hard

to

> get but...here is my problem.

>

> The PCP said to come back in 3 months (but sent me to nutritionist)

> but the nutritionist said to do the submittal now, only she said

she

> doesn't do the submitting.

>

> I was wondering if anyone out there had a VERY supportive PCP in

the

> ez/Walnut Creek offices? I will change PCP's (yet again) if

I

> need to in order to get the submittal done in a more timely manner.

>

> Thanks ahead of time!

[Guest guest]

Nevermind... I was thinking of a different city.

Geography isnt my best subject... lol

> Hi Heidi,

> I am new too... welcome to the group

> Are you from Orange County?

> I was told by the orange county appt center that Kaiser no longer

> requires you to see a dietitian or get a phyc evail. I assume its

> cause Pacific Bariactric has you see one too.

> I am finding that alot of PCP's arent up to speed on Kaiser policy

> sometimes. Your's may not know you dont have to go through those

> steps anymore so he made an appt 3 months later in order for you

to

> get all the other stuff done.

>

> Hugs,

> Kym

>

[Guest guest]

Nevermind... I was thinking of a different city.

Geography isnt my best subject... lol

> Hi Heidi,

> I am new too... welcome to the group

> Are you from Orange County?

> I was told by the orange county appt center that Kaiser no longer

> requires you to see a dietitian or get a phyc evail. I assume its

> cause Pacific Bariactric has you see one too.

> I am finding that alot of PCP's arent up to speed on Kaiser policy

> sometimes. Your's may not know you dont have to go through those

> steps anymore so he made an appt 3 months later in order for you

to

> get all the other stuff done.

>

> Hugs,

> Kym

>