RE: mitoldies: MS

[Guest guest]

well I have been doing MRI's every 6 months and the number of MS appearing

lesions has grown.

One being in my spinal cord that has taken on a life of its own :0

the neurosurgeon is arguing that the diagnosis of Lupus with nito they gave

me is wrong. he says a positive ANA is also seen in MS and that combined with

all the MS symptoms ( also seen in mito I suppose ) with lesions in two

seperate areas is enough to say it is probable MS with mito. He also happens to

have a father diagnosed with MS and he says he is very familiar with the

lesions of MS

Oh how I hate not knowing....

I did do a quick search and found that MS has on many occasions been

suspected as having mito DNA involvment especially in womed with LHON.

oh back to wondering

[Guest guest]

I tried to go that route earlier and the insurance refused an out of state

opinion when there were neuro's and neurosurgeons here that looked at it.

these films have been read by several radiologists, a neuroradiologist and

then transported to another facility and re read by a neurosurgeon and

neuroradiologist. the insurance said no more..

karen

[Guest guest]

It was thought that I had MS before the mito diagnosis. Not all tests

pointed to it, but the symptoms did. Since the symptoms and several of

the MS tests can also be found in MS, it was felt that the abnormal

tests were mis-interpreted due to lack of knowledge that mito even

existed, much less have an understanding of it.

laurie

> has anyone been diagnosed with MS and mito?

>

>

>

>

[Guest guest]

Hi ,

THere are a number of individuals that were originally diagnosed with MS and

later diagnosed with mito. Retrospectively, I think that Dr. Cohen, SHoffner

,etc have told many of those individuals that the " diagnostic " MRI was

incorrectly read and the " plaques " were actually lesions typically seen in

patients with mito. If you have such an MRI, I;d consider having Dr. Cohen or

Dr. Shoffer over read it, ie do an formal interpertation of an outside exam.

Send the films with a clinical history and other diagnostic info.

MitomomX3@... wrote: has anyone been diagnosed with MS and mito?

[Guest guest]

The dilemma is that none of those individuals are mito experts. That seems to

make all of the difference in the world. I do fully understand about the

insurance challenges though. Insurance issues are my worst nightmare.

MitomomX3@... wrote: I tried to go that route earlier and the insurance

refused an out of state

opinion when there were neuro's and neurosurgeons here that looked at it.

these films have been read by several radiologists, a neuroradiologist and

then transported to another facility and re read by a neurosurgeon and

neuroradiologist. the insurance said no more..

karen

[Guest guest]

Hi ,

I am suspected to have Mito and am in the midst of tests to rule MS in or

out. MDA Neuro says she feels what I am experiencing is Mito progression but

as things can co-exist she feels we need to pursue this.

An MRI of my cervical spine with findings suggesting a non specific

myelopathy or demylinating disease and abnormal neuro exam and symptoms have

put me on this path. My last set of labs showed a mildly positive ANA

w/speckled pattern. The other abnormality has been elevated anticardolipin

antibodies. I can't remember what else they showed.

I also have eight kids with varying symptoms.

Hugs,

Marie

_____

From: [mailto: ] On Behalf

Of Joanne Kocourek

Sent: Saturday, February 04, 2006 8:51 AM

To:

Subject: Re: : MS

Hi ,

THere are a number of individuals that were originally diagnosed with MS and

later diagnosed with mito. Retrospectively, I think that Dr. Cohen,

SHoffner ,etc have told many of those individuals that the " diagnostic " MRI

was incorrectly read and the " plaques " were actually lesions typically seen

in patients with mito. If you have such an MRI, I;d consider having Dr.

Cohen or Dr. Shoffer over read it, ie do an formal interpertation of an

outside exam. Send the films with a clinical history and other diagnostic

info.

MitomomX3@... wrote: has anyone been diagnosed with MS and mito?

[Guest guest]

MS is continually a " differential dx " to rule out for me, so I've had

visual evoked potential tests and brain MRIs to look for signs of it.

So far, no signs, but it is a difficult disease to prove, especially

because the one spinal tap I was supposed to have failed.

Take care,

RH

>

> has anyone been diagnosed with MS and mito?

>

>

>

>

[Guest guest]

Some thoughts I need help with:

1) What I know about MS you could put in a thimble, but my understanding is that

the symptoms are due to demyelination of nerve sheaths, some kind of auto-immune

run amok, yes?

2) There is a mix called Lornezo's Oil that helped a boy with a very rare

metabolic disease. As I recall, the symptom/problem was demylination, and the

cause of that was some kind of detergent action (attacking the myelin) by a

buildup of something or other, in turn caused by a genetic inability to process

something else.

3) Peripheral neuropathy occurs mainly in diabetics, but I don't think I've ever

heard any more about why that is, or exactly what the mechanism is (other than

it's " due to " too-high glucose).

PN is of course also frequently present in mito diseases (I have it in spades).

My questions: are there any common threads regarding the cause of the pain or

other symptoms in 1-3 above, and especially, are there implications for pain

TREATMENT in mito? What is known about the ROOT UNDERLYING CAUSES of PN in mito?

Could there perhaps be a Mito Oil waiting to be discovered/synthesized?

Steve D.

Re: : MS

Hi ,

THere are a number of individuals that were originally diagnosed with MS and

later diagnosed with mito. Retrospectively, I think that Dr. Cohen,

SHoffner ,etc have told many of those individuals that the " diagnostic " MRI

was incorrectly read and the " plaques " were actually lesions typically seen

in patients with mito. If you have such an MRI, I;d consider having Dr.

Cohen or Dr. Shoffer over read it, ie do an formal interpertation of an

outside exam. Send the films with a clinical history and other diagnostic

info.

MitomomX3@... wrote: has anyone been diagnosed with MS and mito?

[Guest guest]

Steve,

There is a site for " The Myelin Project " that gives information about

Lorenzo and Lorenzo's oil. The site more or less says Lorenzo's oil has

probably kept him alive, they feel he continues to be able to communicate

with eye blinking but has not regained bodily functions.

The site says Lorenzo's oil does not undo demyelination damage and has not

been shown to help with demyelination caused by other diseases. It appears

to help most in boys who are diagnosed but asymptomatic. It does not appear

to yet be available unless you are part of a trial, one such trial is at

Kennedy Krieger.

I don't have a clue about the Peripheral Neuropathy cause in Mito. I deal

with it as well.

I did do a bit of reading on MS when it was first suggested to me. I read

enough to feel my Neuro is suggesting the necessary tests and reserved the

right to freak when I'm told I should.

MS and Mito or Mito progression. Neither seems like a good choice to wish

for.

I fit it all together in my head by telling myself that I have to expect

anything (symptom) is possible given that my body is in a constant state of

struggling to keep functioning.

My biggest source of frustration/sadness and biggest source of

motivation/happiness are my children and needing to be there for them and

the effects Mito is having on them.

I truly wish I could have some profound thought to help answer your

questions. I find it truly frustrating that we all in the front row seat

watching doctors " practice " medicine.

Very best vibes sent.

Hugs,

Marie (suspected Mito mom to eight suspected Mito kids)

_____

From: [mailto: ] On Behalf

Of Steve

Sent: Sunday, February 05, 2006 2:19 AM

To:

Subject: Re: : MS

Some thoughts I need help with:

1) What I know about MS you could put in a thimble, but my understanding is

that the symptoms are due to demyelination of nerve sheaths, some kind of

auto-immune run amok, yes?

2) There is a mix called Lornezo's Oil that helped a boy with a very rare

metabolic disease. As I recall, the symptom/problem was demylination, and

the cause of that was some kind of detergent action (attacking the myelin)

by a buildup of something or other, in turn caused by a genetic inability to

process something else.

3) Peripheral neuropathy occurs mainly in diabetics, but I don't think I've

ever heard any more about why that is, or exactly what the mechanism is

(other than it's " due to " too-high glucose).

PN is of course also frequently present in mito diseases (I have it in

spades). My questions: are there any common threads regarding the cause of

the pain or other symptoms in 1-3 above, and especially, are there

implications for pain TREATMENT in mito? What is known about the ROOT

UNDERLYING CAUSES of PN in mito? Could there perhaps be a Mito Oil waiting

to be discovered/synthesized?

Steve D.

Re: : MS

Hi ,

THere are a number of individuals that were originally diagnosed with MS

and

later diagnosed with mito. Retrospectively, I think that Dr. Cohen,

SHoffner ,etc have told many of those individuals that the " diagnostic "

MRI

was incorrectly read and the " plaques " were actually lesions typically

seen

in patients with mito. If you have such an MRI, I;d consider having Dr.

Cohen or Dr. Shoffer over read it, ie do an formal interpertation of an

outside exam. Send the films with a clinical history and other diagnostic

info.

MitomomX3@... wrote: has anyone been diagnosed with MS and mito?

[Guest guest]

Steve

Peripheral neuropathy in mito is due to damage (temporary or

permanent) of the periferal nerves due to energy loss to the area.

Mine comes and goes in reaction to the degree of cellular energy. I am

also beginning to realize that when my muscles are in spasm or tight,

that my PN is bad, so I am guessing that the nerves are being

compressed. There are several meds (mostly anticonvulsants) that help

with neuropathic pain, both in mito and diabetic PN.

laurie

> Some thoughts I need help with:

>

> 1) What I know about MS you could put in a thimble, but my understanding is

> that the symptoms are due to demyelination of nerve sheaths, some kind of

> auto-immune run amok, yes?

> 2) There is a mix called Lornezo's Oil that helped a boy with a very rare

> metabolic disease. As I recall, the symptom/problem was demylination, and

> the cause of that was some kind of detergent action (attacking the myelin)

> by a buildup of something or other, in turn caused by a genetic inability to

> process something else.

> 3) Peripheral neuropathy occurs mainly in diabetics, but I don't think I've

> ever heard any more about why that is, or exactly what the mechanism is

> (other than it's " due to " too-high glucose).

>

> PN is of course also frequently present in mito diseases (I have it in

> spades). My questions: are there any common threads regarding the cause of

> the pain or other symptoms in 1-3 above, and especially, are there

> implications for pain TREATMENT in mito? What is known about the ROOT

> UNDERLYING CAUSES of PN in mito? Could there perhaps be a Mito Oil waiting

> to be discovered/synthesized?

>

> Steve D.

>

> Re: : MS

>

>

>

> Hi ,

>

> THere are a number of individuals that were originally diagnosed with MS

> and

> later diagnosed with mito. Retrospectively, I think that Dr. Cohen,

> SHoffner ,etc have told many of those individuals that the " diagnostic "

> MRI

> was incorrectly read and the " plaques " were actually lesions typically

> seen

> in patients with mito. If you have such an MRI, I;d consider having Dr.

> Cohen or Dr. Shoffer over read it, ie do an formal interpertation of an

> outside exam. Send the films with a clinical history and other

> diagnostic

> info.

>

> MitomomX3@... wrote: has anyone been diagnosed with MS and mito?

>

>

>

>

>

>