Re: An answer for the twitching

[Guest guest]

,

I have fasciculations too, and it is my understanding that they can be

associated with mito, though I can't provide you with documentation at the

moment. If I come across any, I will post it.

In his article on seizures, Dr. Saneto says: " Patients with a mitochondrial

cytopathy can have abnormal movements that are not seizures. Examples would

be tremor, body jitteriness, chorea, athetosis, and hemiballismus. "

B

_____

From: mitomomtoo

Sent: Friday, January 28, 2005 9:04 AM

To:

Subject: An answer for the " twitching "

I saw the Neuro Wed. afternoon. He watched my legs wiggle around and

twitch. He also noted the I the muscle wasting in the calves has

become more pronounced. After a few minutes of an exam he " got out

the ole neuro books " :-) He told me that I am going to cost him

money,lol, because he is going to have to buy some new books specific

for Mito. Now that he is seeing me, my son and another young girl

with Mito, he is need of mito friendly literature. He told me that

the movements are neither RLS or Myoclonus, but rather,

Fasciculations. That is a specific type of twitching caused by motor

neuron death. The exact type of muscle movements are seen in ALS. He

didn't know if it is also seen in Mito, so he was off to make some

calls and do some investigationg. He didn't want to start any meds

until he learns more about the fasciculations and the relationship to

Mito. I am glad that we are on the right tract now, but I hate to be

told that it is another problem that can't be fixed and will only get

worse :-( Man am I am sick of hearing that. Thanks for all the help

about this problem for me.

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

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

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

automatically moderated or removed depending on the severity of the attack.

_____

[Guest guest]

Hi ,

Doctors make me so mad when they say things like that. I had a Rheumotologist

complain that she had to spend time (about 2 minutes) filling out a simple form

for disability saying that she didn't get paid for that. What does she think I

was doing???...getting a free visit. She gets paid $250 an hour. I think she

can afford 2 minutes!

The same for your doctor. I figure what you paid for your visit will pretty

much cover the cost of his book(s). These doctors get paid more in a day than

people who are disabled get in a month.

Take care.

Lea

I saw the Neuro Wed. afternoon...He told me that I am going to cost him

money,lol, because he is going to have to buy some new books specific

for Mito.

[Guest guest]

I spoke with Fran at Dr Cohen's office this morning. He is out of the

office until Monday and then she is on vacation for a week. If I am

lucky they will chat in a week from Monday. Fran told me that it is

not a common complaint that she hears from his Mito patients, but as

we know, we are all different and Mito affects us all so differently.

It is highly possible that movement disorders can be another problem

that we are affected by. Hopefully Dr Cohen will have some insight

for me and my doc.

> ,

>

>

>

> I have fasciculations too, and it is my understanding that they can

be

> associated with mito, though I can't provide you with documentation

at the

> moment. If I come across any, I will post it.

>

>

>

> In his article on seizures, Dr. Saneto says: " Patients with a

mitochondrial

> cytopathy can have abnormal movements that are not seizures.

Examples would

> be tremor, body jitteriness, chorea, athetosis, and hemiballismus. "

>

>

>

> B

>

>

>

>

>

>

>

> _____

>

> From: mitomomtoo [mailto:mitomomtoo@a...]

> Sent: Friday, January 28, 2005 9:04 AM

> To:

> Subject: An answer for the " twitching "

>

>

>

>

> I saw the Neuro Wed. afternoon. He watched my legs wiggle around

and

> twitch. He also noted the I the muscle wasting in the calves has

> become more pronounced. After a few minutes of an exam he " got out

> the ole neuro books " :-) He told me that I am going to cost him

> money,lol, because he is going to have to buy some new books

specific

> for Mito. Now that he is seeing me, my son and another young girl

> with Mito, he is need of mito friendly literature. He told me that

> the movements are neither RLS or Myoclonus, but rather,

> Fasciculations. That is a specific type of twitching caused by

motor

> neuron death. The exact type of muscle movements are seen in ALS.

He

> didn't know if it is also seen in Mito, so he was off to make some

> calls and do some investigationg. He didn't want to start any meds

> until he learns more about the fasciculations and the relationship

to

> Mito. I am glad that we are on the right tract now, but I hate to

be

> told that it is another problem that can't be fixed and will only

get

> worse :-( Man am I am sick of hearing that. Thanks for all the

help

> about this problem for me.

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements

contained herein

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

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

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

one is

> automatically moderated or removed depending on the severity of the

attack.

>

>

>

>

>

> _____

>

>

[Guest guest]

I'm surprised to hear that Fran said it is not a common complaint in her

experience. I know it is a very prominent problem for me, and I've only been

symptomatic for 7 months. These fasciculation's or twitches-whichever they are

classified as- were one of the objective findings that made me realize I had

something seriously wrong. I think the twitching and spasm are signs of muscle

injury and death. Based on our board response they are quite common among us.

Maybe this is less of a problem in children, and Fran deals with more children.

Just a thought....

An answer for the " twitching "

>

>

>

>

> I saw the Neuro Wed. afternoon. He watched my legs wiggle around

and

> twitch. He also noted the I the muscle wasting in the calves has

> become more pronounced. After a few minutes of an exam he " got out

> the ole neuro books " :-) He told me that I am going to cost him

> money,lol, because he is going to have to buy some new books

specific

> for Mito. Now that he is seeing me, my son and another young girl

> with Mito, he is need of mito friendly literature. He told me that

> the movements are neither RLS or Myoclonus, but rather,

> Fasciculations. That is a specific type of twitching caused by

motor

> neuron death. The exact type of muscle movements are seen in ALS.

He

> didn't know if it is also seen in Mito, so he was off to make some

> calls and do some investigationg. He didn't want to start any meds

> until he learns more about the fasciculations and the relationship

to

> Mito. I am glad that we are on the right tract now, but I hate to

be

> told that it is another problem that can't be fixed and will only

get

> worse :-( Man am I am sick of hearing that. Thanks for all the

help

> about this problem for me.

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements

contained herein

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

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

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

one is

> automatically moderated or removed depending on the severity of the

attack.

>

>

>

>

>

> _____

>

>

[Guest guest]

I also have faciculations. I might have myoclonus in one spot and

faciculations in another at the same time. Aren't we interesting and a

challenge.

laurie

>

> Reply-To:

> Date: Fri, 28 Jan 2005 15:03:57 -0000

> To:

> Subject: An answer for the " twitching "

>

>

> I saw the Neuro Wed. afternoon. He watched my legs wiggle around and

> twitch. He also noted the I the muscle wasting in the calves has

> become more pronounced. After a few minutes of an exam he " got out

> the ole neuro books " :-) He told me that I am going to cost him

> money,lol, because he is going to have to buy some new books specific

> for Mito. Now that he is seeing me, my son and another young girl

> with Mito, he is need of mito friendly literature. He told me that

> the movements are neither RLS or Myoclonus, but rather,

> Fasciculations. That is a specific type of twitching caused by motor

> neuron death. The exact type of muscle movements are seen in ALS. He

> didn't know if it is also seen in Mito, so he was off to make some

> calls and do some investigationg. He didn't want to start any meds

> until he learns more about the fasciculations and the relationship to

> Mito. I am glad that we are on the right tract now, but I hate to be

> told that it is another problem that can't be fixed and will only get

> worse :-( Man am I am sick of hearing that. Thanks for all the help

> about this problem for me.

>

>

>

>

>

>

>

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

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

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

> automatically moderated or removed depending on the severity of the attack.

>

>

>

> ----------------------------------------------------------------------------

>

>

[Guest guest]

As far as twitching, most of you have already heard me say before that I have a

lot of twitching and things. Mine is due to some myoclonus but I have some

faciculations also. The myoclonus is due to motor neuron damage as I have been

told and I don't have a clue what the faciculations are from.

JHTMD@...> wrote:

I'm surprised to hear that Fran said it is not a common complaint in her

experience. I know it is a very prominent problem for me, and I've only been

symptomatic for 7 months. These fasciculation's or twitches-whichever they are

classified as- were one of the objective findings that made me realize I had

something seriously wrong. I think the twitching and spasm are signs of muscle

injury and death. Based on our board response they are quite common among us.

Maybe this is less of a problem in children, and Fran deals with more children.

Just a thought....

An answer for the " twitching "

>

>

>

>

> I saw the Neuro Wed. afternoon. He watched my legs wiggle around

and

> twitch. He also noted the I the muscle wasting in the calves has

> become more pronounced. After a few minutes of an exam he " got out

> the ole neuro books " :-) He told me that I am going to cost him

> money,lol, because he is going to have to buy some new books

specific

> for Mito. Now that he is seeing me, my son and another young girl

> with Mito, he is need of mito friendly literature. He told me that

> the movements are neither RLS or Myoclonus, but rather,

> Fasciculations. That is a specific type of twitching caused by

motor

> neuron death. The exact type of muscle movements are seen in ALS.

He

> didn't know if it is also seen in Mito, so he was off to make some

> calls and do some investigationg. He didn't want to start any meds

> until he learns more about the fasciculations and the relationship

to

> Mito. I am glad that we are on the right tract now, but I hate to

be

> told that it is another problem that can't be fixed and will only

get

> worse :-( Man am I am sick of hearing that. Thanks for all the

help

> about this problem for me.

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements

contained herein

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

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

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

one is

> automatically moderated or removed depending on the severity of the

attack.

>

>

>

>

>

> _____

>

>

[Guest guest]

I also have fasciculations. And I also have myoclonus. I have to agree with

, I think it is a very common problem within the Mito community.

Maybe the children can't properly explain their " twitches/spasms/fasciculations

for the doctors to understand exactly what they are experiencing. In that case

then they would put the symptom in a catagory that might not be the correct one,

therefore losing valuable information between the three due to a communication

glitch. Thinking out loud...

Ann-Marie

An answer for the " twitching "

>

>

>

>

> I saw the Neuro Wed. afternoon. He watched my legs wiggle around

and

> twitch. He also noted the I the muscle wasting in the calves has

> become more pronounced. After a few minutes of an exam he " got out

> the ole neuro books " :-) He told me that I am going to cost him

> money,lol, because he is going to have to buy some new books

specific

> for Mito. Now that he is seeing me, my son and another young girl

> with Mito, he is need of mito friendly literature. He told me that

> the movements are neither RLS or Myoclonus, but rather,

> Fasciculations. That is a specific type of twitching caused by

motor

> neuron death. The exact type of muscle movements are seen in ALS.

He

> didn't know if it is also seen in Mito, so he was off to make some

> calls and do some investigationg. He didn't want to start any meds

> until he learns more about the fasciculations and the relationship

to

> Mito. I am glad that we are on the right tract now, but I hate to

be

> told that it is another problem that can't be fixed and will only

get

> worse :-( Man am I am sick of hearing that. Thanks for all the

help

> about this problem for me.

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements

contained herein

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

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

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

one is

> automatically moderated or removed depending on the severity of the

attack.

>

>

>

>

>

> _____

>

>

[Guest guest]

I had dead muscle cells in my biopsy ( " necrosis " , diagnosis

is " necrotizing myopathy " ), and I have minimal problems with

fasciculations and tics (well, except for that one major episode last

week, which I think might have been a seizure, or due to my mito doc

stressing me out with tests).

Sometimes I wonder if there are other things out of balance that the

docs ignore because we " have mito " so everything is because of that.

It would be interesting to find out whether the doctors are doing

blood levels of ions like sodium, potassium, and calcium, etc., if

those are out of whack, twitches and similar things are expected.

Take care,

RH

> > ,

> >

> >

> >

> > I have fasciculations too, and it is my understanding that they

can

> be

> > associated with mito, though I can't provide you with

documentation

> at the

> > moment. If I come across any, I will post it.

> >

> >

> >

> > In his article on seizures, Dr. Saneto says: " Patients with a

> mitochondrial

> > cytopathy can have abnormal movements that are not seizures.

> Examples would

> > be tremor, body jitteriness, chorea, athetosis, and

hemiballismus. "

> >

> >

> >

> > B

> >

> >

> >

> >

> >

> >

> >

> > _____

> >

> > From: mitomomtoo [mailto:mitomomtoo@a...]

> > Sent: Friday, January 28, 2005 9:04 AM

> > To:

> > Subject: An answer for the " twitching "

> >

> >

> >

> >

> > I saw the Neuro Wed. afternoon. He watched my legs wiggle

around

> and

> > twitch. He also noted the I the muscle wasting in the calves

has

> > become more pronounced. After a few minutes of an exam he " got

out

> > the ole neuro books " :-) He told me that I am going to cost

him

> > money,lol, because he is going to have to buy some new books

> specific

> > for Mito. Now that he is seeing me, my son and another young

girl

> > with Mito, he is need of mito friendly literature. He told me

that

> > the movements are neither RLS or Myoclonus, but rather,

> > Fasciculations. That is a specific type of twitching caused by

> motor

> > neuron death. The exact type of muscle movements are seen in

ALS.

> He

> > didn't know if it is also seen in Mito, so he was off to make

some

> > calls and do some investigationg. He didn't want to start any

meds

> > until he learns more about the fasciculations and the

relationship

> to

> > Mito. I am glad that we are on the right tract now, but I hate

to

> be

> > told that it is another problem that can't be fixed and will

only

> get

> > worse :-( Man am I am sick of hearing that. Thanks for all

the

> help

> > about this problem for me.

> >

> >

> >

> >

> >

> >

> >

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

> contained herein

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

> this e mail

> > is entirely responsible for its content. List members are

reminded

> of their

> > responsibility to evaluate the content of the postings and

consult

> with

> > their physicians regarding changes in their own treatment.

> >

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

sends

> one is

> > automatically moderated or removed depending on the severity of

the

> attack.

> >

> >

> >

> >

> >

> > _____

> >

> >

[Guest guest]

RH

I am tested every 3 months if not sooner for calcium, potassium, sodium,

phosphorus and magnesium and every 6 months for all the electrolytes plus.

laurie

>

> Reply-To:

> Date: Mon, 31 Jan 2005 03:55:20 -0000

> To:

> Subject: Re: An answer for the " twitching "

>

>

> I had dead muscle cells in my biopsy ( " necrosis " , diagnosis

> is " necrotizing myopathy " ), and I have minimal problems with

> fasciculations and tics (well, except for that one major episode last

> week, which I think might have been a seizure, or due to my mito doc

> stressing me out with tests).

>

> Sometimes I wonder if there are other things out of balance that the

> docs ignore because we " have mito " so everything is because of that.

> It would be interesting to find out whether the doctors are doing

> blood levels of ions like sodium, potassium, and calcium, etc., if

> those are out of whack, twitches and similar things are expected.

>

> Take care,

> RH

>

>

>>> ,

>>>

>>>

>>>

>>> I have fasciculations too, and it is my understanding that they

> can

>> be

>>> associated with mito, though I can't provide you with

> documentation

>> at the

>>> moment. If I come across any, I will post it.

>>>

>>>

>>>

>>> In his article on seizures, Dr. Saneto says: " Patients with a

>> mitochondrial

>>> cytopathy can have abnormal movements that are not seizures.

>> Examples would

>>> be tremor, body jitteriness, chorea, athetosis, and

> hemiballismus. "

>>>

>>>

>>>

>>> B

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>> _____

>>>

>>> From: mitomomtoo [mailto:mitomomtoo@a...]

>>> Sent: Friday, January 28, 2005 9:04 AM

>>> To:

>>> Subject: An answer for the " twitching "

>>>

>>>

>>>

>>>

>>> I saw the Neuro Wed. afternoon. He watched my legs wiggle

> around

>> and

>>> twitch. He also noted the I the muscle wasting in the calves

> has

>>> become more pronounced. After a few minutes of an exam he " got

> out

>>> the ole neuro books " :-) He told me that I am going to cost

> him

>>> money,lol, because he is going to have to buy some new books

>> specific

>>> for Mito. Now that he is seeing me, my son and another young

> girl

>>> with Mito, he is need of mito friendly literature. He told me

> that

>>> the movements are neither RLS or Myoclonus, but rather,

>>> Fasciculations. That is a specific type of twitching caused by

>> motor

>>> neuron death. The exact type of muscle movements are seen in

> ALS.

>> He

>>> didn't know if it is also seen in Mito, so he was off to make

> some

>>> calls and do some investigationg. He didn't want to start any

> meds

>>> until he learns more about the fasciculations and the

> relationship

>> to

>>> Mito. I am glad that we are on the right tract now, but I hate

> to

>> be

>>> told that it is another problem that can't be fixed and will

> only

>> get

>>> worse :-( Man am I am sick of hearing that. Thanks for all

> the

>> help

>>> about this problem for me.

>>>

>>>

>>>

>>>

>>>

>>>

>>>

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

>> contained herein

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

>> this e mail

>>> is entirely responsible for its content. List members are

> reminded

>> of their

>>> responsibility to evaluate the content of the postings and

> consult

>> with

>>> their physicians regarding changes in their own treatment.

>>>

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

> sends

>> one is

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

> the

>> attack.

>>>

>>>

>>>

>>>

>>>

>>> _____

>>>

>>>

[Guest guest]

I think I'll ask for them to do my electrolytes, although now that I

have a PPO, I may be able to just go and get them done myself (wow,

wouldn't THAT be great).

Take care,

RH

> >>> ,

> >>>

> >>>

> >>>

> >>> I have fasciculations too, and it is my understanding that they

> > can

> >> be

> >>> associated with mito, though I can't provide you with

> > documentation

> >> at the

> >>> moment. If I come across any, I will post it.

> >>>

> >>>

> >>>

> >>> In his article on seizures, Dr. Saneto says: " Patients with a

> >> mitochondrial

> >>> cytopathy can have abnormal movements that are not seizures.

> >> Examples would

> >>> be tremor, body jitteriness, chorea, athetosis, and

> > hemiballismus. "

> >>>

> >>>

> >>>

> >>> B

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> _____

> >>>

> >>> From: mitomomtoo [mailto:mitomomtoo@a...]

> >>> Sent: Friday, January 28, 2005 9:04 AM

> >>> To:

> >>> Subject: An answer for the " twitching "

> >>>

> >>>

> >>>

> >>>

> >>> I saw the Neuro Wed. afternoon. He watched my legs wiggle

> > around

> >> and

> >>> twitch. He also noted the I the muscle wasting in the calves

> > has

> >>> become more pronounced. After a few minutes of an exam he " got

> > out

> >>> the ole neuro books " :-) He told me that I am going to cost

> > him

> >>> money,lol, because he is going to have to buy some new books

> >> specific

> >>> for Mito. Now that he is seeing me, my son and another young

> > girl

> >>> with Mito, he is need of mito friendly literature. He told me

> > that

> >>> the movements are neither RLS or Myoclonus, but rather,

> >>> Fasciculations. That is a specific type of twitching caused by

> >> motor

> >>> neuron death. The exact type of muscle movements are seen in

> > ALS.

> >> He

> >>> didn't know if it is also seen in Mito, so he was off to make

> > some

> >>> calls and do some investigationg. He didn't want to start any

> > meds

> >>> until he learns more about the fasciculations and the

> > relationship

> >> to

> >>> Mito. I am glad that we are on the right tract now, but I hate

> > to

> >> be

> >>> told that it is another problem that can't be fixed and will

> > only

> >> get

> >>> worse :-( Man am I am sick of hearing that. Thanks for all

> > the

> >> help

> >>> about this problem for me.

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> 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.

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> _____

> >>>

> >>>