Re: Thank you...and vivian...re:MS diagnosis

[Guest guest]

Jodi,

sorry to hear about your bf. as you know i just went through a breakup so know how it is. he sounds like he needed to be gotten rid of. if you wanna talk about it privately anytime- just email me. ive had those eye symptoms before myself- i just call them eye spasms where they go back and forth. sometimes they last a few mins but a few times theyve lasted all day. they can make you feel awful and nausous and all. What did the ER do for you, anything? Anyways, just wanted to say im sorry your ex-bf treated you like that- im all too familiar with treatment like that. you are better off w/o him and definitely too good for him.

also, about the MS and avonex- im about to see a new neuro that is doing a study on MS and complex 1 (one of the complexs associated with mito) and i just think that alot of people diagnosed with MS might actually have mito. im not sure if mito causes MS though but do wonder if the ABC drugs might help with some mito, who knows. im now on 3 drugs for lupus (another autoimmune condition like MS) which have helped in some ways so hopefully the avonex and mito cocktail together might help you. i take predisone as one of the drugs for lupus and drs also suspected MS and other autoimmune conditions and said it should help them too and also have read it sometimes helps mito- so might be helping everything. anyways, just thought id tell you about my experience. i keep meaning to email you and your father privately but just have been so busy and sick lately. ill try and do it in the next few days to talk about getting together possibly and other things. you are in my thoughts and prayers.

take care,

adrienne

[Guest guest]

HUGS sorry the boyfriend was such a jerk!

> Hi.

> I wanted to thank all of you that replied to my " birth control and

> menstrual cycle " email. A lot has happened lately. Sorry I havent

> gotten back sooner, but i've been quite sick. I ended up in the

> emergency room this weekend.

>

> My eyes were shifting from left to right. This has happened before

> but usually lasted for only a few minutes. Well, this time I had it

> for over 24 hours and became to sick to drive or even cook for

> myself. It left me confused, disoriented and very emotional. I was

> in the Er all alone and found myself crying in the middle of the

> waiting room. I cried in the bed whenever I was alone. It was so

> scary. My boyfriend, or should i say ex after this...wasnt around.

> He was sleeping and didnt get my message. My father had also called

> to see if he could be there for me. So, it was definitley a serious

> enough problem that my father called him. When he finally did get my

> message, he decided going out and drinking with his friends seemed

> more important than being here in a MAJOR time of need. I decided I

> was better off without someone like that. I loved him but came to

> the realization I was in love with who he said he was rather than

> the " real " him. He said things to keep me around, but rarely

> followed through. I am not that needy nor blind enough to stay with

> that. I am strong enough to do this myself and will only surround

> myself with positive people. So, i guess the question about birth

> control is mute for the time being...i will still be considering

> going through the surgery to tie my tubes when my diagnosis is

> complete. I just wish there was a way to stop the excruciating leg

> pain i and the others have dealt with. I was wondering if anyone has

> had a similar episode to the one i experienced this weekend with the

> eyes shifting etc. Just curious and if so, is there a name for it?

>

> Vivian, I too have been told (today) that I have MS, probably cuased

> by Mito. (a MS like syndrome) They are treating me (with Anovex-a

> weekly injection) as if I have MS to see if I get any relief along

> with a mito cocktail. My legs are getting weaker as time goes on. I

> am afraid if they let this go on any longer I may no longer be able

> to walk unassited or walk ever again. We are all curious as to how

> this will work out. When I have more knowledge on this subject I

> would be more than willing to help you out as much as i can.

>

> Take care all and I hope all is well with each and every one of you.

> You are all in my heart and I think of you often. Remember, Smile!

> Love you all, Jess

>

>

>

> 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.

>

[Guest guest]

Jess

If your eyes were moving very rapidly, it was probably nystagmus. Those with

nystagmus usually don't get dizzy when spun. My son had this for years and

everyone he knew wanted him to go on amusement rides, since he didn't get

dizzy.

I hope you start getting some answers medically.

I think you are such a strong person and you will come out on top with the

boyfriend issue. He will be the looser. It may be hard at times, but we are

here for you.

laurie

>

> Reply-To:

> Date: Tue, 18 Mar 2003 00:40:47 -0000

> To:

> Subject: Thank you...and vivian...re:MS diagnosis

>

> Hi.

> I wanted to thank all of you that replied to my " birth control and

> menstrual cycle " email. A lot has happened lately. Sorry I havent

> gotten back sooner, but i've been quite sick. I ended up in the

> emergency room this weekend.

>

> My eyes were shifting from left to right. This has happened before

> but usually lasted for only a few minutes. Well, this time I had it

> for over 24 hours and became to sick to drive or even cook for

> myself. It left me confused, disoriented and very emotional. I was

> in the Er all alone and found myself crying in the middle of the

> waiting room. I cried in the bed whenever I was alone. It was so

> scary. My boyfriend, or should i say ex after this...wasnt around.

> He was sleeping and didnt get my message. My father had also called

> to see if he could be there for me. So, it was definitley a serious

> enough problem that my father called him. When he finally did get my

> message, he decided going out and drinking with his friends seemed

> more important than being here in a MAJOR time of need. I decided I

> was better off without someone like that. I loved him but came to

> the realization I was in love with who he said he was rather than

> the " real " him. He said things to keep me around, but rarely

> followed through. I am not that needy nor blind enough to stay with

> that. I am strong enough to do this myself and will only surround

> myself with positive people. So, i guess the question about birth

> control is mute for the time being...i will still be considering

> going through the surgery to tie my tubes when my diagnosis is

> complete. I just wish there was a way to stop the excruciating leg

> pain i and the others have dealt with. I was wondering if anyone has

> had a similar episode to the one i experienced this weekend with the

> eyes shifting etc. Just curious and if so, is there a name for it?

>

> Vivian, I too have been told (today) that I have MS, probably cuased

> by Mito. (a MS like syndrome) They are treating me (with Anovex-a

> weekly injection) as if I have MS to see if I get any relief along

> with a mito cocktail. My legs are getting weaker as time goes on. I

> am afraid if they let this go on any longer I may no longer be able

> to walk unassited or walk ever again. We are all curious as to how

> this will work out. When I have more knowledge on this subject I

> would be more than willing to help you out as much as i can.

>

> Take care all and I hope all is well with each and every one of you.

> You are all in my heart and I think of you often. Remember, Smile!

> Love you all, Jess

>

>

>

[Guest guest]

Jess,

I am sorry you had to go through all of this. I had never had that happen with my eyes. I hope they figure something out soon. I am sorry about what is going on with your boyfriend. I can relate, I went through that this past summer with mine. It was better for me to break up with him and I do feel I can take better care of myself without him, as he demanded so much (Very possessive).

From your e-mails, I can tell you are a strong person. I know sometimes that is not what you want to hear, as when people tell me that, I want to scream at times because once in awhile I want to let my frustrations out. That is why I am so glad that there is this group. Know you can always vent here. But, I can tell you are a strong person and will go far in life with your great attitude. I will be keeping you in my thoughts and prayers,

Smiles,

a

Hi. I wanted to thank all of you that replied to my "birth control and menstrual cycle" email. A lot has happened lately. Sorry I havent gotten back sooner, but i've been quite sick. I ended up in the emergency room this weekend. My eyes were shifting from left to right. This has happened before but usually lasted for only a few minutes. Well, this time I had it for over 24 hours and became to sick to drive or even cook for myself. It left me confused, disoriented and very emotional. I was in the Er all alone and found myself crying in the middle of the waiting room. I cried in the bed whenever I was alone. It was so scary. My boyfriend, or should i say ex after this...wasnt around. He was sleeping and didnt get my message. My father had also called to see if he could be there for me. So, it was definitley a serious enough problem that my father called him. When he finally did get my message, he decided going out and drinking with his friends seemed more important than being here in a MAJOR time of need. I decided I was better off without someone like that. I loved him but came to the realization I was in love with who he said he was rather than the "real" him. He said things to keep me around, but rarely followed through. I am not that needy nor blind enough to stay with that. I am strong enough to do this myself and will only surround myself with positive people. So, i guess the question about birth control is mute for the time being...i will still be considering going through the surgery to tie my tubes when my diagnosis is complete. I just wish there was a way to stop the excruciating leg pain i and the others have dealt with. I was wondering if anyone has had a similar episode to the one i experienced this weekend with the eyes shifting etc. Just curious and if so, is there a name for it? Vivian, I too have been told (today) that I have MS, probably cuased by Mito. (a MS like syndrome) They are treating me (with Anovex-a weekly injection) as if I have MS to see if I get any relief along with a mito cocktail. My legs are getting weaker as time goes on. I am afraid if they let this go on any longer I may no longer be able to walk unassited or walk ever again. We are all curious as to how this will work out. When I have more knowledge on this subject I would be more than willing to help you out as much as i can.Take care all and I hope all is well with each and every one of you. You are all in my heart and I think of you often. Remember, Smile! Love you all, Jess

[Guest guest]

Laurie,

Thank you for the response. It seems to be getting better (the eye

involvement.) It's less frequent now and lasts only a few minutes at

a time. The worst part is realizing my limitations. It's weird

though I had a lot of leg weakness, but since this episode, my whole

right side is a lot weaker and I am now finding myself relying on a

cane. I dont like that much but sure hurts less than a face plant on

the ground would. LOL. Hope your son is doing well also.

I am so glad I have you all here at times like this and I know that

one day I will have a man in my life who is my best friend and will

be here for me. Even then without that I am so much better alone

than with him. Thank you!

Love, Jess

[Guest guest]

a,

I am sorry to hear that you went through something so similar with

your ex this past summer. I agree, I too, am so much better alone.

Thank you so much for the kind words: " From your e-mails, I can tell

you are a strong person. I know sometimes that is not what you want

to hear, as when people tell me that,I want to scream at times

because once in awhile I want to let my frustrations out. " I

totally understand what you mean, but coming from you, I take it as

one of the highest compliments. Thank you. I too want to scream and

I sometimes cry myself to sleep because i am in so much pain...that i

believe is only healthy...keeping it all in can add so much more

problems. Thank you so much

Love, Jess

[Guest guest]

Adrienne.

I am so sorry you have been sick lately. Take your time with the

private email..first things first, take care of you! ;-) I am not

sure when I will be home again...hopefully sooner than later but I

cant wait to meet you. I know my parents would love to also.

They put me on Prednisone as well...it seems to be helping a little

so far, thank goodness...you are right the eyes spasms made me so

nauseous to and i couldnt read or drive. Thankfully they have slowed

down. They are only lasting for a few minutes a few times a day

instead of all day...it lasted for 5 days! no more of that please!

I live alone and far away from family so i need to be independent.

Besides the fact that i am so stubborn on top of it! LOL.

The ER didnt do anything for me...he said basically it was over his

head. At least he was honest. The one thing he did was call my

neurologist though who is very good. So he passed me on to him that

following Monday.

Breakups are always hard I know..but in this case even though it

hurts so much, i realize it was the best thing i could have done for

myself. I like positive loving people and will only surround myself

with that type from now on!

Thanks so much for sharing your experiences with me! Take care!

Love, Jess

[Guest guest]

Jess

I think you will find the special someone. My son is to be married next

month to his special partner. He is 28 and she is 29, so it has taken

awhile, but it can happen for you too.

laurie

>

> Reply-To:

> Date: Tue, 18 Mar 2003 22:58:07 -0000

> To:

> Subject: Re: Thank you...and vivian...re:MS diagnosis

>

> Laurie,

>

> Thank you for the response. It seems to be getting better (the eye

> involvement.) It's less frequent now and lasts only a few minutes at

> a time. The worst part is realizing my limitations. It's weird

> though I had a lot of leg weakness, but since this episode, my whole

> right side is a lot weaker and I am now finding myself relying on a

> cane. I dont like that much but sure hurts less than a face plant on

> the ground would. LOL. Hope your son is doing well also.

>

> I am so glad I have you all here at times like this and I know that

> one day I will have a man in my life who is my best friend and will

> be here for me. Even then without that I am so much better alone

> than with him. Thank you!

> Love, Jess

>

>

>

[Guest guest]

Jess,

My grandma used to tell me that even though I wanted to be strong (and independent) all the time, that I had to let myself cry/get mad for at LEAST 15 minutes a week. She urged me to do it a little more often. I have found that this helps get the frustrations out so I don't bottle it inside, which would not be good. It also allows me to keep seeing all the positives and try to stay a positive person. I do admit, some days I am not, but I try to be positive and enjoy every minute I have. (I know it sounds cheesy, but it does work). :-)

Smiles,

a

a, I am sorry to hear that you went through something so similar with your ex this past summer. I agree, I too, am so much better alone. Thank you so much for the kind words: "From your e-mails, I can tell you are a strong person. I know sometimes that is not what you want to hear, as when people tell me that,I want to scream at times because once in awhile I want to let my frustrations out." I totally understand what you mean, but coming from you, I take it as one of the highest compliments. Thank you. I too want to scream and I sometimes cry myself to sleep because i am in so much pain...that i believe is only healthy...keeping it all in can add so much more problems. Thank you so muchLove, Jess

[Guest guest]

a

Your grandma was a wise woman. So are you.

laurie

>

> Reply-To:

> Date: Wed, 19 Mar 2003 16:37:52 -0600

> To:

> Subject: Re: Re: Thank you...and vivian...re:MS diagnosis

>

> Jess,

> My grandma used to tell me that even though I wanted to be strong

> (and independent) all the time, that I had to let myself cry/get mad for

> at LEAST 15 minutes a week. She urged me to do it a little more often.

> I have found that this helps get the frustrations out so I don't bottle

> it inside, which would not be good. It also allows me to keep seeing all

> the positives and try to stay a positive person. I do admit, some days I

> am not, but I try to be positive and enjoy every minute I have. (I know

> it sounds cheesy, but it does work). :-)

>

> Smiles,

> a

>

> a,

> I am sorry to hear that you went through something so similar with

> your ex this past summer. I agree, I too, am so much better alone.

>

> Thank you so much for the kind words: " From your e-mails, I can tell

> you are a strong person. I know sometimes that is not what you want

> to hear, as when people tell me that,I want to scream at times

> because once in awhile I want to let my frustrations out. " I

> totally understand what you mean, but coming from you, I take it as

> one of the highest compliments. Thank you. I too want to scream and

> I sometimes cry myself to sleep because i am in so much pain...that i

> believe is only healthy...keeping it all in can add so much more

> problems. Thank you so much

> Love, Jess

[Guest guest]

Thanks Laurie. I always hoped that I could be half as wise as my grandma.

Smiles,

a

aYour grandma was a wise woman. So are you.laurie

[Guest guest]

Jess,

This is really important. I took Avonex

for 9 months, and the number it did on my legs became

permanent. I causes

some level of flu like symptoms, and spasms are one of the side effects. Please talk to your doctor about the

fact that if this is mito, an energy draining drug like Avonex

doesn’t make sense, (at least it doesn’t’ to me. I did not even know what mito was when I took the Avonex shots, but

looking back it was an energy drainer that my body did not need). These are my experiences, but I know

that the Avonex was a huge drain on my system.

Take care of yourself honey. The guy is a jerk. You deserve better and are wise to see

though him.

Vivian

Thank you...and

vivian...re:MS diagnosis

Hi.

I wanted to thank all of you that replied to my

" birth control and

menstrual cycle " email. A lot has

happened lately. Sorry I havent

gotten back sooner, but i've been quite

sick. I ended up in the

emergency room this weekend.

My eyes were shifting from left to right.

This has happened before

but usually lasted for only a few minutes.

Well, this time I had it

for over 24 hours and became to sick to drive or

even cook for

myself. It left me confused, disoriented and

very emotional. I was

in the Er all alone and found myself crying in the

middle of the

waiting room. I cried in the bed whenever I

was alone. It was so

scary. My boyfriend, or should i say ex

after this...wasnt around.

He was sleeping and didnt get my message. My

father had also called

to see if he could be there for me. So, it

was definitley a serious

enough problem that my father called him.

When he finally did get my

message, he decided going out and drinking with

his friends seemed

more important than being here in a MAJOR time of

need. I decided I

was better off without someone like that. I

loved him but came to

the realization I was in love with who he said he

was rather than

the " real " him. He said things to

keep me around, but rarely

followed through. I am not that needy nor

blind enough to stay with

that. I am strong enough to do this myself

and will only surround

myself with positive people. So, i guess the

question about birth

control is mute for the time being...i will still be

considering

going through the surgery to tie my tubes when my

diagnosis is

complete. I just wish there was a way to

stop the excruciating leg

pain i and the others have dealt with. I was

wondering if anyone has

had a similar episode to the one i experienced

this weekend with the

eyes shifting etc. Just curious and if so,

is there a name for it?

Vivian, I too have been told (today) that I have

MS, probably cuased

by Mito. (a MS like syndrome) They are

treating me (with Anovex-a

weekly injection) as if I have MS to see if I get

any relief along

with a mito cocktail. My legs are getting

weaker as time goes on. I

am afraid if they let this go on any longer I may

no longer be able

to walk unassited or walk ever again. We are

all curious as to how

this will work out. When I have more

knowledge on this subject I

would be more than willing to help you out as much

as i can.

Take care all and I hope all is well with each and

every one of you.

You are all in my heart and I think of you often.

Remember, Smile!

Love you all, Jess

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.

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

[Guest guest]

Dear Vivian,

Just wanted to mention that I am totally unable to read your posts: all

I see is blurry blue lettering on a black ground. Perhaps no one else

has this problem at all; it's probably just the limitations of MSN-tv.

Take care.

[Guest guest]

, if you have outlook express, why dont you try hitting forward, and

changing the text to plain text instead of rich text? or just changing the

lettering color to black, as the letters show up blue on a white background.

I am not sure why it shows up on a black background on yours? probably is

some weird msn thing! That way you can read her posts maybe! Either that,

or go to yahoogroups, and change preferences to plain text maybe? (not html

in other words)

HUGS

> Dear Vivian,

> Just wanted to mention that I am totally unable to read your posts: all

> I see is blurry blue lettering on a black ground. Perhaps no one else

> has this problem at all; it's probably just the limitations of MSN-tv.

> Take care.

>

>

>

>

> 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.

>

>

[Guest guest]

Hi

My name is ine. I live in London, England. My partner, , has just been diagnosed with Polymyositis but the Neuro Doc is very puzzled because he shows few symptoms of this disease (its an autoimmune disease), but shows many symptoms of MELAS. He had a muscle biopsy and MELAS was what the doc was looking for. has "peaks and troughs". When he is well, he functions quite well but then he takes a downward spiral - severe hand tremor to the point that he can't write or hold a glass or feed himself or shave. His whole body tremors when he is really bad and he becomes totally confused, disorientated, doesn't remember his name or mine or his parents, forgets things the moment I say it, is bothered by noises, has a puzzled expression on his face all the time as if nothing whatsoever is making sense. 2 days ago he couldn't open the front door at home - the cab driver who dropped him off found him trying to open the door with a coin! He also talks nonsense when he's really ill - says things like "I have to empty the coincidence"!, Got dressed recently then put his pyjamas on ontop of his clothes and put odd shoes on! When he comes out of these bad spells he has no memory of what has happened and the week or so that he's been bad is totally lost from his memory. He also suffers from severe stomach pains, usually first thing in the morning and this happens even when he is well. He always puts it down to something he ate the night before, but I wonder if its all connected. He's really bad again at the moment - he's totally uncommunicative and has completely lost his appetite (its normally very good - he's a real foody!) I am searching for answers but the neuro is quite mystified. Does anyone know of any docs in the UK who specialise in mito? Any help offered would be so greatly appreciated - I don't know which way to turn. By the way, I read all the mails and am in awe of all you people who are suffering from this terrible disease. Are there any carers who can offer me some advice?

ine

Re: Thank you...and vivian...re:MS diagnosis

Jodi,sorry to hear about your bf. as you know i just went through a breakup so know how it is. he sounds like he needed to be gotten rid of. if you wanna talk about it privately anytime- just email me. ive had those eye symptoms before myself- i just call them eye spasms where they go back and forth. sometimes they last a few mins but a few times theyve lasted all day. they can make you feel awful and nausous and all. What did the ER do for you, anything? Anyways, just wanted to say im sorry your ex-bf treated you like that- im all too familiar with treatment like that. you are better off w/o him and definitely too good for him. also, about the MS and avonex- im about to see a new neuro that is doing a study on MS and complex 1 (one of the complexs associated with mito) and i just think that alot of people diagnosed with MS might actually have mito. im not sure if mito causes MS though but do wonder if the ABC drugs might help with some mito, who knows. im now on 3 drugs for lupus (another autoimmune condition like MS) which have helped in some ways so hopefully the avonex and mito cocktail together might help you. i take predisone as one of the drugs for lupus and drs also suspected MS and other autoimmune conditions and said it should help them too and also have read it sometimes helps mito- so might be helping everything. anyways, just thought id tell you about my experience. i keep meaning to email you and your father privately but just have been so busy and sick lately. ill try and do it in the next few days to talk about getting together possibly and other things. you are in my thoughts and prayers.take care,adrienne 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.

[Guest guest]

ine, we call those troughs "crashes". Stomach problems often go along with mito, as well as memory issues. Has the doctor suggested any supplements yet?

Hi

My name is ine. I live in London, England. My partner, , has just been diagnosed with Polymyositis but the Neuro Doc is very puzzled because he shows few symptoms of this disease (its an autoimmune disease), but shows many symptoms of MELAS. He had a muscle biopsy and MELAS was what the doc was looking for. has "peaks and troughs". When he is well, he functions quite well but then he takes a downward spiral - severe hand tremor to the point that he can't write or hold a glass or feed himself or shave. His whole body tremors when he is really bad and he becomes totally confused, disorientated, doesn't remember his name or mine or his parents, forgets things the moment I say it, is bothered by noises, has a puzzled expression on his face all the time as if nothing whatsoever is making sense. 2 days ago he couldn't open the front door at home - the cab driver who dropped him off found him trying to open the door with a coin! He also talks nonsense when he's really ill - says things like "I have to empty the coincidence"!, Got dressed recently then put his pyjamas on ontop of his clothes and put odd shoes on! When he comes out of these bad spells he has no memory of what has happened and the week or so that he's been bad is totally lost from his memory. He also suffers from severe stomach pains, usually first thing in the morning and this happens even when he is well. He always puts it down to something he ate the night before, but I wonder if its all connected. He's really bad again at the moment - he's totally uncommunicative and has completely lost his appetite (its normally very good - he's a real foody!) I am searching for answers but the neuro is quite mystified. Does anyone know of any docs in the UK who specialise in mito? Any help offered would be so greatly appreciated - I don't know which way to turn. By the way, I read all the mails and am in awe of all you people who are suffering from this terrible disease. Are there any carers who can offer me some advice?

ine

Re: Thank you...and vivian...re:MS diagnosis

Jodi,sorry to hear about your bf. as you know i just went through a breakup so know how it is. he sounds like he needed to be gotten rid of. if you wanna talk about it privately anytime- just email me. ive had those eye symptoms before myself- i just call them eye spasms where they go back and forth. sometimes they last a few mins but a few times theyve lasted all day. they can make you feel awful and nausous and all. What did the ER do for you, anything? Anyways, just wanted to say im sorry your ex-bf treated you like that- im all too familiar with treatment like that. you are better off w/o him and definitely too good for him. also, about the MS and avonex- im about to see a new neuro that is doing a study on MS and complex 1 (one of the complexs associated with mito) and i just think that alot of people diagnosed with MS might actually have mito. im not sure if mito causes MS though but do wonder if the ABC drugs might help with some mito, who knows. im now on 3 drugs for lupus (another autoimmune condition like MS) which have helped in some ways so hopefully the avonex and mito cocktail together might help you. i take predisone as one of the drugs for lupus and drs also suspected MS and other autoimmune conditions and said it should help them too and also have read it sometimes helps mito- so might be helping everything. anyways, just thought id tell you about my experience. i keep meaning to email you and your father privately but just have been so busy and sick lately. ill try and do it in the next few days to talk about getting together possibly and other things. you are in my thoughts and prayers.take care,adrienne 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.

[Guest guest]

ine --

Hi, my name is Nan and I am a caregiver too. Not sure that I have any advice for you because I'm not sure that I know what I am doing. I do know that this is a group of diverse and compassionate people and I wouldn't know what to do without their input (even though I don't often acknowledge how helpful everyone is). I have found dealing with this to be both overwhelming and exhausting. When I come home from work, I make a bee line for the computer to see what news is out there that might help me.

I would urge you to take some time for yourself but I have been remiss at taking that advise myself.

Is it just you and ? How long have you been together? How long has he been dealing with the symptoms/issues?

We have been unable to get my stepdaughter into any regular pattern as far as suppliments are concerned because she is entirely TPN dependent at this time. She has a g-tube for drainage and is able to eat only 2-4 crackers a day. She can't take pills and either has to have suppliments in IV form or liquid to go into her g-tube. So, even though we know she should be on suppliments and would probably feel much better if on them, we have to do more homework to get her what she needs.

Hang in there.

Nan

[Guest guest]

Nan,

You do know there is liquid CoQ10 available don't you?

Nan Kronick wrote:

ine --

Hi, my name is Nan and I am a caregiver

too. Not sure that I have any advice for you because I'm not sure that I

know what I am doing. I do know that this is a group of diverse and compassionate

people and I wouldn't know what to do without their input (even though I

don't often acknowledge how helpful everyone is). I have found dealing with

this to be both overwhelming and exhausting. When I come home from work,

I make a bee line for the computer to see what news is out there that might

help me.

I would urge you to take some time for

yourself but I have been remiss at taking that advise myself.

Is it just you and ? How long have

you been together? How long has he been dealing with the symptoms/issues?

We have been unable to get my stepdaughter

into any regular pattern as far as suppliments are concerned because she

is entirely TPN dependent at this time. She has a g-tube for drainage and

is able to eat only 2-4 crackers a day. She can't take pills and either

has to have suppliments in IV form or liquid to go into her g-tube. So,

even though we know she should be on suppliments and would probably feel

much better if on them, we have to do more homework to get her what she

needs.

Hang in there.

Nan

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.

[Guest guest]

-

I am a real amateur at this. Yes, I remember doing some searching on the web and finding the liquid form BUT at the time, couldn't take liquids orally and her g-tube was way too small (10 French). Liquids would just not go through.

Last Thursday, they changed her g-tube to a larger size (24 French). Now they will try her on the liquid neurontin and see if that can go through the new tube (she has been off the neurontin since mid-February).

Then I will do what I can about getting the Liquid CoQ10. Unfortunately, there are only so many hours in the day and I am not real good about balancing my job, the rest of my family, and all that goes into making as comfortable as possible. I don't juggle as well as the rest of you, but I am willing to learn.

Peace --- Nan

Re: Thank you...and vivian...re:MS diagnosis

Nan,You do know there is liquid CoQ10 available don't you?Nan Kronick wrote:

ine --

Hi, my name is Nan and I am a caregiver too. Not sure that I have any advice for you because I'm not sure that I know what I am doing. I do know that this is a group of diverse and compassionate people and I wouldn't know what to do without their input (even though I don't often acknowledge how helpful everyone is). I have found dealing with this to be both overwhelming and exhausting. When I come home from work, I make a bee line for the computer to see what news is out there that might help me.

I would urge you to take some time for yourself but I have been remiss at taking that advise myself.

Is it just you and ? How long have you been together? How long has he been dealing with the symptoms/issues?

We have been unable to get my stepdaughter into any regular pattern as far as suppliments are concerned because she is entirely TPN dependent at this time. She has a g-tube for drainage and is able to eat only 2-4 crackers a day. She can't take pills and either has to have suppliments in IV form or liquid to go into her g-tube. So, even though we know she should be on suppliments and would probably feel much better if on them, we have to do more homework to get her what she needs.

Hang in there.

NanMedical 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.

[Guest guest]

Nan

I think you must juggle very well. It must be very overwhelming. Just

remember, some of us have been at this a very long time and still can't

juggle what has to be done.

laurie

>

> Reply-To:

> Date: Sun, 23 Mar 2003 09:36:37 -0600

> To: < >

> Subject: Re: Thank you...and vivian...re:MS diagnosis

>

> -

>

> I am a real amateur at this. Yes, I remember doing some searching on the web

> and finding the liquid form BUT at the time, couldn't take liquids

> orally and her g-tube was way too small (10 French). Liquids would just not go

> through.

>

> Last Thursday, they changed her g-tube to a larger size (24 French). Now they

> will try her on the liquid neurontin and see if that can go through the new

> tube (she has been off the neurontin since mid-February).

>

> Then I will do what I can about getting the Liquid CoQ10. Unfortunately, there

> are only so many hours in the day and I am not real good about balancing my

> job, the rest of my family, and all that goes into making as comfortable

> as possible. I don't juggle as well as the rest of you, but I am willing to

> learn.

>

> Peace --- Nan

> Re: Thank you...and vivian...re:MS diagnosis

>

>

> Nan,

>

> You do know there is liquid CoQ10 available don't you?

>

>

>

> Nan Kronick wrote:

>

> ine --

>

> Hi, my name is Nan and I am a caregiver too. Not sure that I have any advice

> for you because I'm not sure that I know what I am doing. I do know that this

> is a group of diverse and compassionate people and I wouldn't know what to do

> without their input (even though I don't often acknowledge how helpful

> everyone is). I have found dealing with this to be both overwhelming and

> exhausting. When I come home from work, I make a bee line for the computer to

> see what news is out there that might help me.

>

> I would urge you to take some time for yourself but I have been remiss at

> taking that advise myself.

>

> Is it just you and ? How long have you been together? How long has he

> been dealing with the symptoms/issues?

>

> We have been unable to get my stepdaughter into any regular pattern as far as

> suppliments are concerned because she is entirely TPN dependent at this time.

> She has a g-tube for drainage and is able to eat only 2-4 crackers a day. She

> can't take pills and either has to have suppliments in IV form or liquid to go

> into her g-tube. So, even though we know she should be on suppliments and

> would probably feel much better if on them, we have to do more homework to get

> her what she needs.

>

> Hang in there.

>

> Nan

>

>

> 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.

>

>

[Guest guest]

True! Some days it is like, I can only do 70% of what needs to be done,

what things will it be? Then there are days it is on 30 or 40, then there

are days where it is none, and you are so crashy that the best you can do is

survive.

> Nan

>

> I think you must juggle very well. It must be very overwhelming. Just

> remember, some of us have been at this a very long time and still can't

> juggle what has to be done.

>

> laurie

>

[Guest guest]

Hi Nan

Thanks for responding. and I have only been together for 14 months although we dated way back in 1966 when I was 16 and he was 19. We went our separate ways and then found eachother again in November 2001 on the Friends Reunited website.

He's pretty sick at the moment - I had him admitted to hospital today as he was terribly confused, disoriented, non-communicative etc. He does odd things when he's confused. The Doc is seeing him tomorrow and we will discuss the current diagnosis of Polymyositis but I'm convinced he has MELAS - that's what the Doc was looking for when he did the muscle biopsy.

So sorry to hear that your stepdaughter has such problems - wow, this is such a terrible situation.

Thanks for your message. I have already gained a lot of very useful information from and this has convinced me that has a mito condition.

Regards

ine

Re: Thank you...and vivian...re:MS diagnosis

ine --

Hi, my name is Nan and I am a caregiver too. Not sure that I have any advice for you because I'm not sure that I know what I am doing. I do know that this is a group of diverse and compassionate people and I wouldn't know what to do without their input (even though I don't often acknowledge how helpful everyone is). I have found dealing with this to be both overwhelming and exhausting. When I come home from work, I make a bee line for the computer to see what news is out there that might help me.

I would urge you to take some time for yourself but I have been remiss at taking that advise myself.

Is it just you and ? How long have you been together? How long has he been dealing with the symptoms/issues?

We have been unable to get my stepdaughter into any regular pattern as far as suppliments are concerned because she is entirely TPN dependent at this time. She has a g-tube for drainage and is able to eat only 2-4 crackers a day. She can't take pills and either has to have suppliments in IV form or liquid to go into her g-tube. So, even though we know she should be on suppliments and would probably feel much better if on them, we have to do more homework to get her what she needs.

Hang in there.

NanMedical 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.

[Guest guest]

ine

I will keep you and in my thoughts.

laurie

>

> Reply-To:

> Date: Sun, 23 Mar 2003 23:44:11 -0000

> To: < >

> Subject: Re: Thank you...and vivian...re:MS diagnosis

>

> Hi Nan

>

> Thanks for responding. and I have only been together for 14 months

> although we dated way back in 1966 when I was 16 and he was 19. We went our

> separate ways and then found eachother again in November 2001 on the Friends

> Reunited website.

> He's pretty sick at the moment - I had him admitted to hospital today as he

> was terribly confused, disoriented, non-communicative etc. He does odd things

> when he's confused. The Doc is seeing him tomorrow and we will discuss the

> current diagnosis of Polymyositis but I'm convinced he has MELAS - that's what

> the Doc was looking for when he did the muscle biopsy.

> So sorry to hear that your stepdaughter has such problems - wow, this is such

> a terrible situation.

> Thanks for your message. I have already gained a lot of very useful

> information from and this has convinced me that has a mito

> condition.

> Regards

> ine

> Re: Thank you...and vivian...re:MS diagnosis

>

>

> ine --

>

> Hi, my name is Nan and I am a caregiver too. Not sure that I have any advice

> for you because I'm not sure that I know what I am doing. I do know that this

> is a group of diverse and compassionate people and I wouldn't know what to do

> without their input (even though I don't often acknowledge how helpful

> everyone is). I have found dealing with this to be both overwhelming and

> exhausting. When I come home from work, I make a bee line for the computer to

> see what news is out there that might help me.

>

> I would urge you to take some time for yourself but I have been remiss at

> taking that advise myself.

>

> Is it just you and ? How long have you been together? How long has he

> been dealing with the symptoms/issues?

>

> We have been unable to get my stepdaughter into any regular pattern as far as

> suppliments are concerned because she is entirely TPN dependent at this time.

> She has a g-tube for drainage and is able to eat only 2-4 crackers a day. She

> can't take pills and either has to have suppliments in IV form or liquid to go

> into her g-tube. So, even though we know she should be on suppliments and

> would probably feel much better if on them, we have to do more homework to get

> her what she needs.

>

> Hang in there.

>

> Nan

>

>