Re: back from the hospital stay- long

[Guest guest]

Adrienne, Thanks for the update. Sounds like your doctors are really trying

to help you, so that part is good. Your problems are so complex, even the

experts must feel overwhelmed at times, as I'm sure you do too. I certainly

hope this latest round of testing and new doctors will result in some

concrete help. I was interested in your drs comment that the pain meds may

be aggravating colon problems. This was certainly my experience and is one

of the reasons I quit the pain pills.

Keep hanging on to that word HOPE!

Take care,

Barbara

_____

From: moonchild62579@...

Sent: Sunday, December 12, 2004 12:52 PM

To:

Subject: back from the hospital stay- long

hey guys,

Dont think yall knew, but I went into the hospital very early friday

december 3 after spending thursday night in several ERs before they figured

out which hospital they decided was best for me. I actually ended up going

into DC childrens hospital because several of my drs are there and some of

my drs are at a hospital nearby. I went in due numerous things including

severe sleep deprivation due to pain and nausea which lead to several

seizures, vomiting and increased autonomic problems.I figured I would only

be in over the weekend to monitor my seizures and to get my autonomic probs

under control, etc. Well, they decided they wanted to keep me till last

night. I was put on IV carnitor there finally (had stopped taking oral due

to how it affected me GI wise), they put me on a PCA pain pump there for my

pain they had me see several specialists- not only the dr that treats me

autonomic probs (those he got under control in 2-3 days) but then a neuro

who put me on the carnitor to help with the neuro probs (seizures etc) and

mito of course, they had me see GI and nutrition because I hadnt had a bowel

movement in a long time and wasnt able to eat solids at all and liquid diet

much at all. I went through a procedure to try and clean out my colon over

about 5 days and that didnt work so they now realize my colon dysmotility is

alot more severe than they thought it was. They are trying me on meds that

arent working so they want me to see some other motility specialists that

they have suggested (several, nearest is over 2 hrs away) and see what my

other options are (like sugery I guess). And to do more extensive GI tests

and see how bad my small bowel dysmotility is too. My gastoparesis is

getting severe too but they arent sure if that might be secondary to the

bowel probs. Swallowing luckily is still not so good but not getting worse.

Anyways, nutrtion wants me to also have the GI look into feeding tube or TPN

with how my eating is, depending on what the drs feel my gut can take (if it

could take a feeding tube, etc). The drs also are weening me off pain meds

now because they feel its making my colon worse (also one of the drs said

that mito didnt cause severe pain ever ha)- I dont know if it is because my

colon was bad before pain meds, they have me on methadone now instead of

dialudid and sending me to johns hopkins pain management clinic to get their

opinion on it all. I'm in alot of pain because of the med change but trying

to deal. Being in the hospital bed most the time (had to be on a monitor all

the time because of my heart etc) didnt help either, feeling weaker now.

Also now I am having more bladder probs, losing control of my bladder now

sometimes along with the past probs I had (interstitial cystitis and

neurogenic bladder) and my uro wants to teach me to self cath. I go up to

s hopkins on Tues to see an internist that specializes in genetic

diseases and he supposively is interested in mito and wants to try and get

me a team together up there because i have so many pediatric drs down here

and they seem to want me to get adult drs now. Who knows what he will be

doing for me there, the hospital seemed to want me to go into an inpatient

adult program for some things still (pain management, GI probs, etc) so we

will see, they already have contacted a GI dr and pain dr up there for me, I

dont know. Anyways, I hope that everyone else is doing ok, Its been so

stressful here for me- my poor mom has had to do all this by herself taking

care of me, my dad didnt even come to visit me or anything, we have talked

about moving out and closer to my drs in baltimore if it works out with them

even, i dont know, I dont know what I would do w/o yall and my mom, it seems

that the 2-3 friends i had left have finally deserted me (moved away, got

mad at me because of my disease, etc). Enough venting, I just exausted and

upset right now. Hope that some are doing better than i and those doing

worse, Im hoping things start getting better.

take care, Adrienne

[Guest guest]

Adrienne, Thanks for the update. Sounds like your doctors are really trying

to help you, so that part is good. Your problems are so complex, even the

experts must feel overwhelmed at times, as I'm sure you do too. I certainly

hope this latest round of testing and new doctors will result in some

concrete help. I was interested in your drs comment that the pain meds may

be aggravating colon problems. This was certainly my experience and is one

of the reasons I quit the pain pills.

Keep hanging on to that word HOPE!

Take care,

Barbara

_____

From: moonchild62579@...

Sent: Sunday, December 12, 2004 12:52 PM

To:

Subject: back from the hospital stay- long

hey guys,

Dont think yall knew, but I went into the hospital very early friday

december 3 after spending thursday night in several ERs before they figured

out which hospital they decided was best for me. I actually ended up going

into DC childrens hospital because several of my drs are there and some of

my drs are at a hospital nearby. I went in due numerous things including

severe sleep deprivation due to pain and nausea which lead to several

seizures, vomiting and increased autonomic problems.I figured I would only

be in over the weekend to monitor my seizures and to get my autonomic probs

under control, etc. Well, they decided they wanted to keep me till last

night. I was put on IV carnitor there finally (had stopped taking oral due

to how it affected me GI wise), they put me on a PCA pain pump there for my

pain they had me see several specialists- not only the dr that treats me

autonomic probs (those he got under control in 2-3 days) but then a neuro

who put me on the carnitor to help with the neuro probs (seizures etc) and

mito of course, they had me see GI and nutrition because I hadnt had a bowel

movement in a long time and wasnt able to eat solids at all and liquid diet

much at all. I went through a procedure to try and clean out my colon over

about 5 days and that didnt work so they now realize my colon dysmotility is

alot more severe than they thought it was. They are trying me on meds that

arent working so they want me to see some other motility specialists that

they have suggested (several, nearest is over 2 hrs away) and see what my

other options are (like sugery I guess). And to do more extensive GI tests

and see how bad my small bowel dysmotility is too. My gastoparesis is

getting severe too but they arent sure if that might be secondary to the

bowel probs. Swallowing luckily is still not so good but not getting worse.

Anyways, nutrtion wants me to also have the GI look into feeding tube or TPN

with how my eating is, depending on what the drs feel my gut can take (if it

could take a feeding tube, etc). The drs also are weening me off pain meds

now because they feel its making my colon worse (also one of the drs said

that mito didnt cause severe pain ever ha)- I dont know if it is because my

colon was bad before pain meds, they have me on methadone now instead of

dialudid and sending me to johns hopkins pain management clinic to get their

opinion on it all. I'm in alot of pain because of the med change but trying

to deal. Being in the hospital bed most the time (had to be on a monitor all

the time because of my heart etc) didnt help either, feeling weaker now.

Also now I am having more bladder probs, losing control of my bladder now

sometimes along with the past probs I had (interstitial cystitis and

neurogenic bladder) and my uro wants to teach me to self cath. I go up to

s hopkins on Tues to see an internist that specializes in genetic

diseases and he supposively is interested in mito and wants to try and get

me a team together up there because i have so many pediatric drs down here

and they seem to want me to get adult drs now. Who knows what he will be

doing for me there, the hospital seemed to want me to go into an inpatient

adult program for some things still (pain management, GI probs, etc) so we

will see, they already have contacted a GI dr and pain dr up there for me, I

dont know. Anyways, I hope that everyone else is doing ok, Its been so

stressful here for me- my poor mom has had to do all this by herself taking

care of me, my dad didnt even come to visit me or anything, we have talked

about moving out and closer to my drs in baltimore if it works out with them

even, i dont know, I dont know what I would do w/o yall and my mom, it seems

that the 2-3 friends i had left have finally deserted me (moved away, got

mad at me because of my disease, etc). Enough venting, I just exausted and

upset right now. Hope that some are doing better than i and those doing

worse, Im hoping things start getting better.

take care, Adrienne

[Guest guest]

Adrienne

I will keep you in my thoughts and prayers.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Sun, 12 Dec 2004 18:51:57 +0000

> To:

> Subject: back from the hospital stay- long

>

> hey guys,

> Dont think yall knew, but I went into the hospital very early friday december

> 3 after spending thursday night in several ERs before they figured out which

> hospital they decided was best for me. I actually ended up going into DC

> childrens hospital because several of my drs are there and some of my drs are

> at a hospital nearby. I went in due numerous things including severe sleep

> deprivation due to pain and nausea which lead to several seizures, vomiting

> and increased autonomic problems.I figured I would only be in over the weekend

> to monitor my seizures and to get my autonomic probs under control, etc. Well,

> they decided they wanted to keep me till last night. I was put on IV carnitor

> there finally (had stopped taking oral due to how it affected me GI wise),

> they put me on a PCA pain pump there for my pain they had me see several

> specialists- not only the dr that treats me autonomic probs (those he got

> under control in 2-3 days) but then a neuro who put me on the carnitor to help

> with the neuro probs (seizures etc) and mito of course, they had me see GI and

> nutrition because I hadnt had a bowel movement in a long time and wasnt able

> to eat solids at all and liquid diet much at all. I went through a procedure

> to try and clean out my colon over about 5 days and that didnt work so they

> now realize my colon dysmotility is alot more severe than they thought it was.

> They are trying me on meds that arent working so they want me to see some

> other motility specialists that they have suggested (several, nearest is over

> 2 hrs away) and see what my other options are (like sugery I guess). And to do

> more extensive GI tests and see how bad my small bowel dysmotility is too. My

> gastoparesis is getting severe too but they arent sure if that might be

> secondary to the bowel probs. Swallowing luckily is still not so good but not

> getting worse. Anyways, nutrtion wants me to also have the GI look into

> feeding tube or TPN with how my eating is, depending on what the drs feel my

> gut can take (if it could take a feeding tube, etc) . The drs also are weening

> me off pain meds now because they feel its making my colon worse (also one of

> the drs said that mito didnt cause severe pain ever ha)- I dont know if it is

> because my colon was bad before pain meds, they have me on methadone now

> instead of dialudid and sending me to johns hopkins pain management clinic to

> get their opinion on it all. I'm in alot of pain because of the med change but

> trying to deal. Being in the hospital bed most the time (had to be on a

> monitor all the time because of my heart etc) didnt help either, feeling

> weaker now. Also now I am having more bladder probs, losing control of my

> bladder now sometimes along with the past probs I had (interstitial cystitis

> and neurogenic bladder) and my uro wants to teach me to self cath. I go up to

> s hopkins on Tues to see an internist that specializes in genetic diseases

> and he supposively is interested in mito and wants to try and get me a team

> together up there because i have so many pediatric drs down here and they seem

> to want me to get adult drs now. Who knows what he will be doing for me there,

> the hospital seemed to want me to go into an inpatient adult program for some

> things still (pain management, GI probs, etc) so we will see, they already

> have contacted a GI dr and pain dr up there for me, I dont know. Anyways, I

> hope that everyone else is doing ok, Its been so stressful here for me- my

> poor mom has had to do all this by herself taking care of me, my dad didnt

> even come to visit me or anything, we have talked about moving out and closer

> to my drs in baltimore if it works out with them even, i dont know, I dont

> know what I would do w/o yall and my mom, it seems that the 2-3 friends i had

> left have finally deserted me (moved away, got mad at me because of my

> disease, etc). Enough venting, I just exausted and upset right now. Hope that

> some are doing better than i and those doing worse, Im hoping things start

> getting better.

> take care, Adrienne

>

>

[Guest guest]

Adrienne, I'm glad your docs are working on the problems. Sorry to

hear you've been in the hospital for so long, but I'm glad you're

out ! I don't do well in the hospital because it seems like they

never know what to do with me and don't understand the dietary and

fluid needs. I end up getting a really bad attitude, not to mention

my mito always gets worse. I'll send you some hugs and well

wishes !

bug

[Guest guest]

Adrienne, I'm glad your docs are working on the problems. Sorry to

hear you've been in the hospital for so long, but I'm glad you're

out ! I don't do well in the hospital because it seems like they

never know what to do with me and don't understand the dietary and

fluid needs. I end up getting a really bad attitude, not to mention

my mito always gets worse. I'll send you some hugs and well

wishes !

bug

[Guest guest]

Dear Adrienne,

I am so sorry to read your message and how much you are dealing with again. I

wish I could just come there and hug you and let you know that I am your friend

and will always be here for you. Friends who have parted the ways are not real

friends so you haven't really lost anything.

's Hopkins is a wonderful facility. I especially hope that you can get the

attention you need there. It sounds as if Dr Gropeman is unable to put together

the team that you need and I'm very sorry about that.

Please tell Mom that we are here for her too if she needs us. Mito is a family

thing and we care about all of you. Please try to get as much rest as you can.

I'm sorry that things are so bad and have upset you so much and hope that

tomorrow brings a sunny day and has you feeling just a little bit better.

Alice

[Guest guest]

--I replyed earlier, but it did not seem to go through. I am soo

sorry that you are having such a hard time right now. My heart goes

out to you. Also it is so hard when friend start to fall away. I

have experianced that myself. I just do not have the energy to

maintain a social lide. I wish you the best of luck at Hopkins

and hope you have a wonderful team of Drs. Wishing you some relief

from your symptoms soon. Take care!

Dawn Anich

- In , moonchild62579@c... wrote:

> hey guys,

> Dont think yall knew, but I went into the hospital very early

friday december 3 after spending thursday night in several ERs

before they figured out which hospital they decided was best for me.

I actually ended up going into DC childrens hospital because several

of my drs are there and some of my drs are at a hospital nearby. I

went in due numerous things including severe sleep deprivation due

to pain and nausea which lead to several seizures, vomiting and

increased autonomic problems.I figured I would only be in over the

weekend to monitor my seizures and to get my autonomic probs under

control, etc. Well, they decided they wanted to keep me till last

night. I was put on IV carnitor there finally (had stopped taking

oral due to how it affected me GI wise), they put me on a PCA pain

pump there for my pain they had me see several specialists- not only

the dr that treats me autonomic probs (those he got under control in

2-3 days) but then a neuro who put me on the carnitor to help with

the neuro probs (seizures etc) and mito of course, they had me see

GI and nutrition because I hadnt had a bowel movement in a long time

and wasnt able to eat solids at all and liquid diet much at all. I

went through a procedure to try and clean out my colon over about 5

days and that didnt work so they now realize my colon dysmotility is

alot more severe than they thought it was. They are trying me on

meds that arent working so they want me to see some other motility

specialists that they have suggested (several, nearest is over 2 hrs

away) and see what my other options are (like sugery I guess). And

to do more extensive GI tests and see how bad my small bowel

dysmotility is too. My gastoparesis is getting severe too but they

arent sure if that might be secondary to the bowel probs. Swallowing

luckily is still not so good but not getting worse. Anyways,

nutrtion wants me to also have the GI look into feeding tube or TPN

with how my eating is, depending on what the drs feel my gut can

take (if it could take a feeding tube, etc). The drs also are

weening me off pain meds now because they feel its making my colon

worse (also one of the drs said that mito didnt cause severe pain

ever ha)- I dont know if it is because my colon was bad before pain

meds, they have me on methadone now instead of dialudid and sending

me to johns hopkins pain management clinic to get their opinion on

it all. I'm in alot of pain because of the med change but trying to

deal. Being in the hospital bed most the time (had to be on a

monitor all the time because of my heart etc) didnt help either,

feeling weaker now. Also now I am having more bladder probs, losing

control of my bladder now sometimes along with the past probs I had

(interstitial cystitis and neurogenic bladder) and my uro wants to

teach me to self cath. I go up to s hopkins on Tues to see an

internist that specializes in genetic diseases and he supposively is

interested in mito and wants to try and get me a team together up

there because i have so many pediatric drs down here and they seem

to want me to get adult drs now. Who knows what he will be doing for

me there, the hospital seemed to want me to go into an inpatient

adult program for some things still (pain management, GI probs, etc)

so we will see, they already have contacted a GI dr and pain dr up

there for me, I dont know. Anyways, I hope that everyone else is

doing ok, Its been so stressful here for me- my poor mom has had to

do all this by herself taking care of me, my dad didnt even come to

visit me or anything, we have talked about moving out and closer to

my drs in baltimore if it works out with them even, i dont know, I

dont know what I would do w/o yall and my mom, it seems that the 2-3

friends i had left have finally deserted me (moved away, got mad at

me because of my disease, etc). Enough venting, I just exausted and

upset right now. Hope that some are doing better than i and those

doing worse, Im hoping things start getting better.

> take care, Adrienne

>

>

[Guest guest]

Adrienne,

I'm sorry to hear all what has been going on. I know it is

frustrating not to have a team of doctors, or even just one doctor that

knows a little of what to do. I am thinking of you and hope things start

looking up a little now that you are home. I will be in contact soon!

Hugs and Smiles,

a

On Sun, 12 Dec 2004 18:51:57 +0000 moonchild62579@... writes:

hey guys,

Dont think yall knew, but I went into the hospital very early friday

december 3 after spending thursday night in several ERs before they

figured out which hospital they decided was best for me. I actually ended

up going into DC childrens hospital because several of my drs are there

and some of my drs are at a hospital nearby. I went in due numerous

things including severe sleep deprivation due to pain and nausea which

lead to several seizures, vomiting and increased autonomic problems.I

figured I would only be in over the weekend to monitor my seizures and to

get my autonomic probs under control, etc. Well, they decided they wanted

to keep me till last night. I was put on IV carnitor there finally (had

stopped taking oral due to how it affected me GI wise), they put me on a

PCA pain pump there for my pain they had me see several specialists- not

only the dr that treats me autonomic probs (those he got under control in

2-3 days) but then a neuro who put me on the carnitor to help with the

neuro probs (seizures etc) and mito of course, they had me see GI and

nutrition because I hadnt had a bowel movement in a long time and wasnt

able to eat solids at all and liquid diet much at all. I went through a

procedure to try and clean out my colon over about 5 days and that didnt

work so they now realize my colon dysmotility is alot more severe than

they thought it was. They are trying me on meds that arent working so

they want me to see some other motility specialists that they have

suggested (several, nearest is over 2 hrs away) and see what my other

options are (like sugery I guess). And to do more extensive GI tests and

see how bad my small bowel dysmotility is too. My gastoparesis is getting

severe too but they arent sure if that might be secondary to the bowel

probs. Swallowing luckily is still not so good but not getting worse.

Anyways, nutrtion wants me to also have the GI look into feeding tube or

TPN with how my eating is, depending on what the drs feel my gut can take

(if it could take a feeding tube, etc). The drs also are weening me off

pain meds now because they feel its making my colon worse (also one of

the drs said that mito didnt cause severe pain ever ha)- I dont know if

it is because my colon was bad before pain meds, they have me on

methadone now instead of dialudid and sending me to johns hopkins pain

management clinic to get their opinion on it all. I'm in alot of pain

because of the med change but trying to deal. Being in the hospital bed

most the time (had to be on a monitor all the time because of my heart

etc) didnt help either, feeling weaker now. Also now I am having more

bladder probs, losing control of my bladder now sometimes along with the

past probs I had (interstitial cystitis and neurogenic bladder) and my

uro wants to teach me to self cath. I go up to s hopkins on Tues to

see an internist that specializes in genetic diseases and he supposively

is interested in mito and wants to try and get me a team together up

there because i have so many pediatric drs down here and they seem to

want me to get adult drs now. Who knows what he will be doing for me

there, the hospital seemed to want me to go into an inpatient adult

program for some things still (pain management, GI probs, etc) so we will

see, they already have contacted a GI dr and pain dr up there for me, I

dont know. Anyways, I hope that everyone else is doing ok, Its been so

stressful here for me- my poor mom has had to do all this by herself

taking care of me, my dad didnt even come to visit me or anything, we

have talked about moving out and closer to my drs in baltimore if it

works out with them even, i dont know, I dont know what I would do w/o

yall and my mom, it seems that the 2-3 friends i had left have finally

deserted me (moved away, got mad at me because of my disease, etc).

Enough venting, I just exausted and upset right now. Hope that some are

doing better than i and those doing worse, Im hoping things start getting

better.

take care, Adrienne

[Guest guest]

Sorry you had to go through that. Did they try Lactulose for the

dysmotility, or Xifaxan (an antibiotic that targets the colon)? Did

they test your ammonia levels?

It seems I am in the GI realm more than the neuro realm lately,

treating the GI problems makes some of my neuro symptoms better.

What kind of pain are you going through - muscle pain (lactic acid

buildup maybe) or joint pain? I use a supplement (methyl sulfonyl

methyl) for joint pain, but my muscle pain is intermittent luckily so

I've been able to just rest to keep it to a minimum.

YMMV, IMHO, I am not a doctor, but these things have helped me. Pain

meds can really screw you up, and cause dysmotility, so it would be

nice if you could see a specialist who can minimize GI symptoms from

your pain control meds.

Take care,

RH

> hey guys,

> Dont think yall knew, but I went into the hospital very early

friday december 3 after spending thursday night in several ERs

before they figured out which hospital they decided was best for me.

I actually ended up going into DC childrens hospital because several

of my drs are there and some of my drs are at a hospital nearby. I

went in due numerous things including severe sleep deprivation due to

pain and nausea which lead to several seizures, vomiting and

increased autonomic problems.I figured I would only be in over the

weekend to monitor my seizures and to get my autonomic probs under

control, etc. Well, they decided they wanted to keep me till last

night. I was put on IV carnitor there finally (had stopped taking

oral due to how it affected me GI wise), they put me on a PCA pain

pump there for my pain they had me see several specialists- not only

the dr that treats me autonomic probs (those he got under control in

2-3 days) but then a neuro who put me on the carnitor to help with

the neuro probs (seizures etc) and mito of course, they had me see GI

and nutrition because I hadnt had a bowel movement in a long time and

wasnt able to eat solids at all and liquid diet much at all. I went

through a procedure to try and clean out my colon over about 5 days

and that didnt work so they now realize my colon dysmotility is alot

more severe than they thought it was. They are trying me on meds that

arent working so they want me to see some other motility specialists

that they have suggested (several, nearest is over 2 hrs away) and

see what my other options are (like sugery I guess). And to do more

extensive GI tests and see how bad my small bowel dysmotility is too.

My gastoparesis is getting severe too but they arent sure if that

might be secondary to the bowel probs. Swallowing luckily is still

not so good but not getting worse. Anyways, nutrtion wants me to also

have the GI look into feeding tube or TPN with how my eating is,

depending on what the drs feel my gut can take (if it could take a

feeding tube, etc). The drs also are weening me off pain meds now

because they feel its making my colon worse (also one of the drs said

that mito didnt cause severe pain ever ha)- I dont know if it is

because my colon was bad before pain meds, they have me on methadone

now instead of dialudid and sending me to johns hopkins pain

management clinic to get their opinion on it all. I'm in alot of pain

because of the med change but trying to deal. Being in the hospital

bed most the time (had to be on a monitor all the time because of my

heart etc) didnt help either, feeling weaker now. Also now I am

having more bladder probs, losing control of my bladder now sometimes

along with the past probs I had (interstitial cystitis and neurogenic

bladder) and my uro wants to teach me to self cath. I go up to s

hopkins on Tues to see an internist that specializes in genetic

diseases and he supposively is interested in mito and wants to try

and get me a team together up there because i have so many pediatric

drs down here and they seem to want me to get adult drs now. Who

knows what he will be doing for me there, the hospital seemed to want

me to go into an inpatient adult program for some things still (pain

management, GI probs, etc) so we will see, they already have

contacted a GI dr and pain dr up there for me, I dont know. Anyways,

I hope that everyone else is doing ok, Its been so stressful here for

me- my poor mom has had to do all this by herself taking care of me,

my dad didnt even come to visit me or anything, we have talked about

moving out and closer to my drs in baltimore if it works out with

them even, i dont know, I dont know what I would do w/o yall and my

mom, it seems that the 2-3 friends i had left have finally deserted

me (moved away, got mad at me because of my disease, etc). Enough

venting, I just exausted and upset right now. Hope that some are

doing better than i and those doing worse, Im hoping things start

getting better.

> take care, Adrienne

>

>