Jump to content
RemedySpot.com

difficult question

Rate this topic


Guest guest

Recommended Posts

Guest guest

This is difficult to ask but here is the only place I know to get an

answer. Husband has had a drastic turn and has been hospitalized for

two weeks with total strength shutdown. He can't eat, sit, or stay

awake beyond five minutes.

My question is for those that have gone through the end of this

disease...is this going to be it? He is now in a rehab facility and

agreed to a temporary feeding tube for seven days but I want to

encourage him to keep at it and he's beginning to believe his body is

giving up. Has anyone had recovery from such a total shut down? His

mind is sharp, he's all there is all ways but strength and the

" experts " have no answers for us. Any guidance will be appreciated.

Link to comment
Share on other sites

Guest guest

Hi all!

I introduced myself a while back, but have not been around for a while.

I took my daughter to Boston last Monday to see Dr. Korson and he does

believe she could have mito. She will see some doc down here in Atlanta

and have a biopsy by Schoffner. This makes me very nervous and I have

been prolonging it since Oct! She and I both will go back to Boston in

6 months. I have put myself on the back burner while I have been

worrying about her, but I am in one of my " funks " as I call it, right

now. Extreme fatigue, muscle weakness/achy, ha, not sleeping, etc. I

was wondering if anyone knows of an adult doc in the Atlanta area that

deals with or is familiar with mito?

Thanks,

Stormy in GA

~~It is better to be hated for who you are than to be loved for who you

are not~~

difficult question

This is difficult to ask but here is the only place I know to get an

answer. Husband has had a drastic turn and has been hospitalized for

two weeks with total strength shutdown. He can't eat, sit, or stay

awake beyond five minutes.

My question is for those that have gone through the end of this

disease...is this going to be it? He is now in a rehab facility and

agreed to a temporary feeding tube for seven days but I want to

encourage him to keep at it and he's beginning to believe his body is

giving up. Has anyone had recovery from such a total shut down? His

mind is sharp, he's all there is all ways but strength and the

" experts " have no answers for us. Any guidance will be appreciated.

Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of

this e mail is entirely responsible for its content. List members are

reminded of their responsibility to evaluate the content of the postings

and consult with their physicians regarding changes in their own

treatment.

Personal attacks are not permitted on the list and anyone who sends one

is automatically moderated or removed depending on the severity of the

attack.

Link to comment
Share on other sites

Guest guest

Shoffner in Atlanta is great. I belive he is seeing patients in addtion

to doing the biopsies, but this can change from time to time so I would

check with his office.

Stormy wrote:

>Hi all!

>I introduced myself a while back, but have not been around for a while.

>I took my daughter to Boston last Monday to see Dr. Korson and he does

>believe she could have mito. She will see some doc down here in Atlanta

>and have a biopsy by Schoffner. This makes me very nervous and I have

>been prolonging it since Oct! She and I both will go back to Boston in

>6 months. I have put myself on the back burner while I have been

>worrying about her, but I am in one of my " funks " as I call it, right

>now. Extreme fatigue, muscle weakness/achy, ha, not sleeping, etc. I

>was wondering if anyone knows of an adult doc in the Atlanta area that

>deals with or is familiar with mito?

>

>Thanks,

>Stormy in GA

>

>~~It is better to be hated for who you are than to be loved for who you

>are not~~

>

> difficult question

>

>This is difficult to ask but here is the only place I know to get an

>answer. Husband has had a drastic turn and has been hospitalized for

>two weeks with total strength shutdown. He can't eat, sit, or stay

>awake beyond five minutes.

>

>My question is for those that have gone through the end of this

>disease...is this going to be it? He is now in a rehab facility and

>agreed to a temporary feeding tube for seven days but I want to

>encourage him to keep at it and he's beginning to believe his body is

>giving up. Has anyone had recovery from such a total shut down? His

>mind is sharp, he's all there is all ways but strength and the

> " experts " have no answers for us. Any guidance will be appreciated.

>

>

>

>

>

>

>Medical advice, information, opinions, data and statements contained

>herein are not necessarily those of the list moderators. The author of

>this e mail is entirely responsible for its content. List members are

>reminded of their responsibility to evaluate the content of the postings

>and consult with their physicians regarding changes in their own

>treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one

>is automatically moderated or removed depending on the severity of the

>attack.

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

Stormy

It is good to hear from you. I'm sorry to hear that your daughter may

also have mito. I traveled to Atlanta to get my biopsy from Dr.

Shoffner. It was done under a local and I left and went out to dinner.

He was very good. I don't know of any other mito docs in your area.

laurie

> Hi all!

> I introduced myself a while back, but have not been around for a while.

> I took my daughter to Boston last Monday to see Dr. Korson and he does

> believe she could have mito. She will see some doc down here in Atlanta

> and have a biopsy by Schoffner. This makes me very nervous and I have

> been prolonging it since Oct! She and I both will go back to Boston in

> 6 months. I have put myself on the back burner while I have been

> worrying about her, but I am in one of my " funks " as I call it, right

> now. Extreme fatigue, muscle weakness/achy, ha, not sleeping, etc. I

> was wondering if anyone knows of an adult doc in the Atlanta area that

> deals with or is familiar with mito?

>

> Thanks,

> Stormy in GA

>

> ~~It is better to be hated for who you are than to be loved for who you

> are not~~

>

>

> difficult question

>

> This is difficult to ask but here is the only place I know to get an

> answer. Husband has had a drastic turn and has been hospitalized for

> two weeks with total strength shutdown. He can't eat, sit, or stay

> awake beyond five minutes.

>

> My question is for those that have gone through the end of this

> disease...is this going to be it? He is now in a rehab facility and

> agreed to a temporary feeding tube for seven days but I want to

> encourage him to keep at it and he's beginning to believe his body is

> giving up. Has anyone had recovery from such a total shut down? His

> mind is sharp, he's all there is all ways but strength and the

> " experts " have no answers for us. Any guidance will be appreciated.

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the postings

> and consult with their physicians regarding changes in their own

> treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one

> is automatically moderated or removed depending on the severity of the

> attack.

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

Dr. Shoffner in Atlanta diagnoses both adults and children.

Stormy imstormy@...> wrote: Hi all!

I introduced myself a while back, but have not been around for a while.

I took my daughter to Boston last Monday to see Dr. Korson and he does

believe she could have mito. She will see some doc down here in Atlanta

and have a biopsy by Schoffner. This makes me very nervous and I have

been prolonging it since Oct! She and I both will go back to Boston in

6 months. I have put myself on the back burner while I have been

worrying about her, but I am in one of my " funks " as I call it, right

now. Extreme fatigue, muscle weakness/achy, ha, not sleeping, etc. I

was wondering if anyone knows of an adult doc in the Atlanta area that

deals with or is familiar with mito?

Thanks,

Stormy in GA

~~It is better to be hated for who you are than to be loved for who you

are not~~

difficult question

This is difficult to ask but here is the only place I know to get an

answer. Husband has had a drastic turn and has been hospitalized for

two weeks with total strength shutdown. He can't eat, sit, or stay

awake beyond five minutes.

My question is for those that have gone through the end of this

disease...is this going to be it? He is now in a rehab facility and

agreed to a temporary feeding tube for seven days but I want to

encourage him to keep at it and he's beginning to believe his body is

giving up. Has anyone had recovery from such a total shut down? His

mind is sharp, he's all there is all ways but strength and the

" experts " have no answers for us. Any guidance will be appreciated.

Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of

this e mail is entirely responsible for its content. List members are

reminded of their responsibility to evaluate the content of the postings

and consult with their physicians regarding changes in their own

treatment.

Personal attacks are not permitted on the list and anyone who sends one

is automatically moderated or removed depending on the severity of the

attack.

Link to comment
Share on other sites

Guest guest

Yes, I know Schoffner diagnosis both, but I was hoping to find maybe an

adult neurologist or even a primary care that was at least familiar with

mito. I was just thinking that it would be nice to have some different

exams and maybe tests done so when I do see Korson in the fall I will be

one step ahead.

Thanks!

Stormy in GA

~~It is better to be hated for who you are than to be loved for who you

are not~~

difficult question

This is difficult to ask but here is the only place I know to get an

answer. Husband has had a drastic turn and has been hospitalized for

two weeks with total strength shutdown. He can't eat, sit, or stay

awake beyond five minutes.

My question is for those that have gone through the end of this

disease...is this going to be it? He is now in a rehab facility and

agreed to a temporary feeding tube for seven days but I want to

encourage him to keep at it and he's beginning to believe his body is

giving up. Has anyone had recovery from such a total shut down? His

mind is sharp, he's all there is all ways but strength and the

" experts " have no answers for us. Any guidance will be appreciated.

Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of

this e mail is entirely responsible for its content. List members are

reminded of their responsibility to evaluate the content of the postings

and consult with their physicians regarding changes in their own

treatment.

Personal attacks are not permitted on the list and anyone who sends one

is automatically moderated or removed depending on the severity of the

attack.

Link to comment
Share on other sites

Guest guest

When I first became overtly symptomatic, I was out of town and went into

a complete, rapid motor shutdown. It was a very bizarre presentation, and

I think I had the flu or some other infection that precipitated the event.

I couldn't even roll over in bed, and felt the worst I had ever felt in my

life. I gradually improved somewhat, and was able to get home in a

wheelchair. Once home, I was mostly flat on my back for 3 weeks. I think it

was a tincture of time- rest, eating as well as I possibly could-that

finally got me through . I returned to work and gradually improved for

several months, only to have a must less acute and less severe relapse which

never has really gone away.

As has been said many times on this board, every case is so different.

How one person responds in a certain situation really doesn't necessarily

have much predictive value for someone else. I did want to share my story

with you because, from what I've gleaned, (to use your terminology)

" drastic " changes are atypical. Also, I wanted you to know that, in my

case, a decent recovery was possible. In a nutshell, I guess what I'm

trying to say is, don't give up hope.

JT

difficult question

> This is difficult to ask but here is the only place I know to get an

> answer. Husband has had a drastic turn and has been hospitalized for

> two weeks with total strength shutdown. He can't eat, sit, or stay

> awake beyond five minutes.

>

> My question is for those that have gone through the end of this

> disease...is this going to be it? He is now in a rehab facility and

> agreed to a temporary feeding tube for seven days but I want to

> encourage him to keep at it and he's beginning to believe his body is

> giving up. Has anyone had recovery from such a total shut down? His

> mind is sharp, he's all there is all ways but strength and the

> " experts " have no answers for us. Any guidance will be appreciated.

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the postings

> and consult with their physicians regarding changes in their own

> treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the

> attack.

>

>

Link to comment
Share on other sites

Guest guest

Dr. Shoffner does differential diagnosis of other conditions, that is

other than mitochondrial disease. For example, he was looking for

different neuromuscular diseases in my case, as well as genetic

conditions like familial hemiplegic migraine and autoimmune

conditions and MS.

I had my fresh muscle biopsy when I was pregnant, and a pediatric

neurologist did the surgery. I did find that he was very sensitive

to my pain level, and the whole thing went pretty well. Also, my MDA

doctor recommended additional tests, and Dr. Shoffner recommended

some additional tests at the time of the fresh muscle biopsy, such

that they gave me local anesthesia at my blood draw site because they

had so many vials to take LOL...

Take care,

RH

Hi all!

> I introduced myself a while back, but have not been around for a

while.

> I took my daughter to Boston last Monday to see Dr. Korson and he

does

> believe she could have mito. She will see some doc down here in

Atlanta

> and have a biopsy by Schoffner. This makes me very nervous and I

have

> been prolonging it since Oct! She and I both will go back to

Boston in

> 6 months. I have put myself on the back burner while I have been

> worrying about her, but I am in one of my " funks " as I call it,

right

> now. Extreme fatigue, muscle weakness/achy, ha, not sleeping,

etc. I

> was wondering if anyone knows of an adult doc in the Atlanta area

that

> deals with or is familiar with mito?

>

> Thanks,

> Stormy in GA

>

> ~~It is better to be hated for who you are than to be loved for who

you

> are not~~

>

> difficult question

>

> This is difficult to ask but here is the only place I know to get an

> answer. Husband has had a drastic turn and has been hospitalized

for

> two weeks with total strength shutdown. He can't eat, sit, or stay

> awake beyond five minutes.

>

> My question is for those that have gone through the end of this

> disease...is this going to be it? He is now in a rehab facility and

> agreed to a temporary feeding tube for seven days but I want to

> encourage him to keep at it and he's beginning to believe his body

is

> giving up. Has anyone had recovery from such a total shut down?

His

> mind is sharp, he's all there is all ways but strength and the

> " experts " have no answers for us. Any guidance will be appreciated.

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author

of

> this e mail is entirely responsible for its content. List members

are

> reminded of their responsibility to evaluate the content of the

postings

> and consult with their physicians regarding changes in their own

> treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

one

> is automatically moderated or removed depending on the severity of

the

> attack.

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

HI Stormy,

I see that you will be going to Boston soon to see Dr. Korson. You are looking

for a PCP or a Neurologist who knows about Mito. I do not live in the Atlanta

area so I can recommend a doctor for you. But I did want to mention that if you

have a PCP that you see now, he/she would be alright to continue with. I don't

know of many people who have PCP's who actually knew about Mito beforehand. If

your PCP is willing to learn and take direction from your other Specialists it

will be fine to continue with them.

Also have you contacted your local MDA Clinic in your area? Most MDA Clinics

have Neurologists who take care of the Mito patients. I think the most important

thing is to make sure that ALL of your doctors are willing to work together.

Mito patients have many different sub-specialists that help to maintain their

health, and it is important that they all get along and can work together

without some of them getting a BIG head and thinking they know it ALL.

When is your appt. with Dr. Korson? I also see Dr. Korson and am going up to

Boston to see him in the next few months. If we are there at the same time we

can meet and get to know each other. I would like that.

Hugs,

Ann-Marie

difficult question

This is difficult to ask but here is the only place I know to get an

answer. Husband has had a drastic turn and has been hospitalized for

two weeks with total strength shutdown. He can't eat, sit, or stay

awake beyond five minutes.

My question is for those that have gone through the end of this

disease...is this going to be it? He is now in a rehab facility and

agreed to a temporary feeding tube for seven days but I want to

encourage him to keep at it and he's beginning to believe his body is

giving up. Has anyone had recovery from such a total shut down? His

mind is sharp, he's all there is all ways but strength and the

" experts " have no answers for us. Any guidance will be appreciated.

Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of

this e mail is entirely responsible for its content. List members are

reminded of their responsibility to evaluate the content of the postings

and consult with their physicians regarding changes in their own

treatment.

Personal attacks are not permitted on the list and anyone who sends one

is automatically moderated or removed depending on the severity of the

attack.

Link to comment
Share on other sites

Guest guest

> I have no answer for you, but my heart aches for your sadness.My husband Dave

has been on hospice since Nov.2005 and he dies a little everyday. the only thing

he has left is strength. the muscle coordination is terrible and atrophy to the

brain, feeding tube when he asks for food he chokes on it as he eats it.he

doesn't do much anymore except sleep or sit in his recliner and watch TV.

I wish there I had an answer to your questions but I don't just know I'm

thinking of your situation and you too.

Kim (Roanoke VA)

>

> Date: 2006/03/19 Sun PM 01:31:56 EST

> To:

> Subject: difficult question

>

>

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...