Re: First time poster - questionable diagnosis and have some questions

[Guest guest]

Randall - I have recently been diagnosed with MM on the basis of

clinical signs and symptoms, plus an abnormal lactate/pyruvate ratio

(despite a normal skin biopsy). I hope I'm not speaking beyond my

rather newly-acquired knowledge about MM, but my understanding, from

Dr. Cohen at the Cleveland Clinic, is that an elevated pyruvate level

is meaningless in the absence of an abnormal lactate level. Also,

among a bunch of other symptoms, I have fluctuating muscle

weakness/aches and rather pronounced tremors, which I'm in the process

of investigating with doctors. I'm about to see a " movement

specialist, " whom I believe will be investigating the possibility of

" parkinson's related to " the MM. Again - I'm no expert, but my

understanding is that having MM can precipitate movement disorders.

>

> Hi,

>

> Just joined and this is my first post. Have been having muscle problems

> for years and one neurologist (out of the many I've seen) thought I

> might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> recently because of increase in symptoms and he again reiterated that he

> thinks I might have MM. The evidence for this diagnosis is pretty

> spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

> proliferation and possible excess lipid (disputed by 2 other hospitals

> that reviewed it and biopsy in 88 was considered normal), slightly

> reduced NADH on respiratory enzyme study of biopsy and an occasionally

> elevated serum pyruvate level (but lactate has never been clearly

> elevated).

>

> I have had mild, fluctuating muscle weakness going back about 25

years,

> as well as intermittent problems swallowing and with speech, and even

> breathing (with fluctuating pulmonary studies). In the 80's I had 2

> EMGs that suggested ALS or motor neuron disease but most EMGS, including

> the most recent ones, have been basically normal. However, I have a lot

> of twitching and possibly some atrophy, so am concerned I have ALS or

> some motor neuron disease rather than MM. Of most concern is noticing

> what appears to be changes in surface of tongue - increased irregularity

> that I think is the kind of atrophy seen in ALS. I'm skeptical of

> the MM dx (as where other neurologists back in the 90's when this neuro

> first suggested it. This neuro is a neuromuscular specialist who now

> heads an MDA clinic.

>

> So with this long-winded introduction, would like to ask these

> questions: Anyone with MM have weakness, twitching or atrophy of the

> tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> neurologists at some point? Anyone with occasionally elevated pyruvate

> but not lactate? Neurologist suggested (again) I take antioxidant

> cocktail, particularly CoQ10. This can be rather expensive, so can

> anyone suggest a place to get it (and possibly other supplements) at

> reasonable cost, but still good quality? What doses are people taking

> it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> possibly more effective than CoQ10. Anyone using it instead?

>

> Thanks for any feedback

>

> Randall

>

>

>

[Guest guest]

,

Thanks for the reply. Is Dr. Cohen your doctor? Yes, I read the same thing

about pyruvate. Mentioned this to my neuro and he conceded that lactate is

usually elevated in MM but said it doesn't have to be. Think he was under the

false impression that lactate had been elevated in the past, but the highest it

has been was at the very top of the normal range. My pyruvate isn't very

elevated on most recent test anyway. This is why I am skeptical of dx.

Unfortunately the alternative of ALS or something like it isn't very appealing.

Randall

Re: First time poster - questionable diagnosis and have

some questions

Randall - I have recently been diagnosed with MM on the basis of

clinical signs and symptoms, plus an abnormal lactate/pyruvate ratio

(despite a normal skin biopsy). I hope I'm not speaking beyond my

rather newly-acquired knowledge about MM, but my understanding, from

Dr. Cohen at the Cleveland Clinic, is that an elevated pyruvate level

is meaningless in the absence of an abnormal lactate level. Also,

among a bunch of other symptoms, I have fluctuating muscle

weakness/aches and rather pronounced tremors, which I'm in the process

of investigating with doctors. I'm about to see a " movement

specialist, " whom I believe will be investigating the possibility of

" parkinson's related to " the MM. Again - I'm no expert, but my

understanding is that having MM can precipitate movement disorders.

>

> Hi,

>

> Just joined and this is my first post. Have been having muscle problems

> for years and one neurologist (out of the many I've seen) thought I

> might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> recently because of increase in symptoms and he again reiterated that he

> thinks I might have MM. The evidence for this diagnosis is pretty

> spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

> proliferation and possible excess lipid (disputed by 2 other hospitals

> that reviewed it and biopsy in 88 was considered normal), slightly

> reduced NADH on respiratory enzyme study of biopsy and an occasionally

> elevated serum pyruvate level (but lactate has never been clearly

> elevated).

>

> I have had mild, fluctuating muscle weakness going back about 25

years,

> as well as intermittent problems swallowing and with speech, and even

> breathing (with fluctuating pulmonary studies). In the 80's I had 2

> EMGs that suggested ALS or motor neuron disease but most EMGS, including

> the most recent ones, have been basically normal. However, I have a lot

> of twitching and possibly some atrophy, so am concerned I have ALS or

> some motor neuron disease rather than MM. Of most concern is noticing

> what appears to be changes in surface of tongue - increased irregularity

> that I think is the kind of atrophy seen in ALS. I'm skeptical of

> the MM dx (as where other neurologists back in the 90's when this neuro

> first suggested it. This neuro is a neuromuscular specialist who now

> heads an MDA clinic.

>

> So with this long-winded introduction, would like to ask these

> questions: Anyone with MM have weakness, twitching or atrophy of the

> tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> neurologists at some point? Anyone with occasionally elevated pyruvate

> but not lactate? Neurologist suggested (again) I take antioxidant

> cocktail, particularly CoQ10. This can be rather expensive, so can

> anyone suggest a place to get it (and possibly other supplements) at

> reasonable cost, but still good quality? What doses are people taking

> it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> possibly more effective than CoQ10. Anyone using it instead?

>

> Thanks for any feedback

>

> Randall

>

>

>

[Guest guest]

Randell

Welcome to the group.

Yes, I have weakness and twitching, but not of the tongue.

Pyruvate and lactate can be normal, but the ratio can be abnormal or

as in your case, one normal and the other abnormal, but again, it is

the ratio that is most important.

I get my CoQ10 from Tishcon. If you have mito and call them, you can

get a discount. It is still expensive, but this kind is more

bioavailable, so more CoQ gets into the system. I am probably not the

norm, but I take 240 mg. four times a day or a total of 960 mg per

day. Some docs are now saying that unless you take enough, you might

as well not waste your money. Others say that you should take 5-10 mg.

per kilo of bosy weight. My personal experience is that I noticed

changes when I got up to that level.

laurie

>

> Hi,

>

> Just joined and this is my first post. Have been having muscle problems

> for years and one neurologist (out of the many I've seen) thought I

> might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> recently because of increase in symptoms and he again reiterated that he

> thinks I might have MM. The evidence for this diagnosis is pretty

> spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

> proliferation and possible excess lipid (disputed by 2 other hospitals

> that reviewed it and biopsy in 88 was considered normal), slightly

> reduced NADH on respiratory enzyme study of biopsy and an occasionally

> elevated serum pyruvate level (but lactate has never been clearly

> elevated).

>

> I have had mild, fluctuating muscle weakness going back about 25 years,

> as well as intermittent problems swallowing and with speech, and even

> breathing (with fluctuating pulmonary studies). In the 80's I had 2

> EMGs that suggested ALS or motor neuron disease but most EMGS, including

> the most recent ones, have been basically normal. However, I have a lot

> of twitching and possibly some atrophy, so am concerned I have ALS or

> some motor neuron disease rather than MM. Of most concern is noticing

> what appears to be changes in surface of tongue - increased irregularity

> that I think is the kind of atrophy seen in ALS. I'm skeptical of

> the MM dx (as where other neurologists back in the 90's when this neuro

> first suggested it. This neuro is a neuromuscular specialist who now

> heads an MDA clinic.

>

> So with this long-winded introduction, would like to ask these

> questions: Anyone with MM have weakness, twitching or atrophy of the

> tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> neurologists at some point? Anyone with occasionally elevated pyruvate

> but not lactate? Neurologist suggested (again) I take antioxidant

> cocktail, particularly CoQ10. This can be rather expensive, so can

> anyone suggest a place to get it (and possibly other supplements) at

> reasonable cost, but still good quality? What doses are people taking

> it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> possibly more effective than CoQ10. Anyone using it instead?

>

> Thanks for any feedback

>

> Randall

>

>

>

[Guest guest]

I have muscle twitching, myoclonus and dystonia which all thought to

be part of my mito and all considered movement disorders. Mine are

improved with Lamictal and Baclofen.

laurie

>

> Randall - I have recently been diagnosed with MM on the basis of

> clinical signs and symptoms, plus an abnormal lactate/pyruvate ratio

> (despite a normal skin biopsy). I hope I'm not speaking beyond my

> rather newly-acquired knowledge about MM, but my understanding, from

> Dr. Cohen at the Cleveland Clinic, is that an elevated pyruvate level

> is meaningless in the absence of an abnormal lactate level. Also,

> among a bunch of other symptoms, I have fluctuating muscle

> weakness/aches and rather pronounced tremors, which I'm in the process

> of investigating with doctors. I'm about to see a " movement

> specialist, " whom I believe will be investigating the possibility of

> " parkinson's related to " the MM. Again - I'm no expert, but my

> understanding is that having MM can precipitate movement disorders.

>

>

> >

> > Hi,

> >

> > Just joined and this is my first post. Have been having muscle problems

> > for years and one neurologist (out of the many I've seen) thought I

> > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > recently because of increase in symptoms and he again reiterated that he

> > thinks I might have MM. The evidence for this diagnosis is pretty

> > spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

> > proliferation and possible excess lipid (disputed by 2 other hospitals

> > that reviewed it and biopsy in 88 was considered normal), slightly

> > reduced NADH on respiratory enzyme study of biopsy and an occasionally

> > elevated serum pyruvate level (but lactate has never been clearly

> > elevated).

> >

> > I have had mild, fluctuating muscle weakness going back about 25

> years,

> > as well as intermittent problems swallowing and with speech, and even

> > breathing (with fluctuating pulmonary studies). In the 80's I had 2

> > EMGs that suggested ALS or motor neuron disease but most EMGS, including

> > the most recent ones, have been basically normal. However, I have a lot

> > of twitching and possibly some atrophy, so am concerned I have ALS or

> > some motor neuron disease rather than MM. Of most concern is noticing

> > what appears to be changes in surface of tongue - increased irregularity

> > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > the MM dx (as where other neurologists back in the 90's when this neuro

> > first suggested it. This neuro is a neuromuscular specialist who now

> > heads an MDA clinic.

> >

> > So with this long-winded introduction, would like to ask these

> > questions: Anyone with MM have weakness, twitching or atrophy of the

> > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > neurologists at some point? Anyone with occasionally elevated pyruvate

> > but not lactate? Neurologist suggested (again) I take antioxidant

> > cocktail, particularly CoQ10. This can be rather expensive, so can

> > anyone suggest a place to get it (and possibly other supplements) at

> > reasonable cost, but still good quality? What doses are people taking

> > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > possibly more effective than CoQ10. Anyone using it instead?

> >

> > Thanks for any feedback

> >

> > Randall

> >

> >

> >

[Guest guest]

Randall, I get ittermitent muscle weakness and when I am weaker and not feeling

as well I also get muscle fatigue of my tongue and swallowing muscles. The mito

cocktail works really well for me.

startfromscratch05 ranbo1@...> wrote: Hi,

Just joined and this is my first post. Have been having muscle problems

for years and one neurologist (out of the many I've seen) thought I

might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

recently because of increase in symptoms and he again reiterated that he

thinks I might have MM. The evidence for this diagnosis is pretty

spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

proliferation and possible excess lipid (disputed by 2 other hospitals

that reviewed it and biopsy in 88 was considered normal), slightly

reduced NADH on respiratory enzyme study of biopsy and an occasionally

elevated serum pyruvate level (but lactate has never been clearly

elevated).

I have had mild, fluctuating muscle weakness going back about 25 years,

as well as intermittent problems swallowing and with speech, and even

breathing (with fluctuating pulmonary studies). In the 80's I had 2

EMGs that suggested ALS or motor neuron disease but most EMGS, including

the most recent ones, have been basically normal. However, I have a lot

of twitching and possibly some atrophy, so am concerned I have ALS or

some motor neuron disease rather than MM. Of most concern is noticing

what appears to be changes in surface of tongue - increased irregularity

that I think is the kind of atrophy seen in ALS. I'm skeptical of

the MM dx (as where other neurologists back in the 90's when this neuro

first suggested it. This neuro is a neuromuscular specialist who now

heads an MDA clinic.

So with this long-winded introduction, would like to ask these

questions: Anyone with MM have weakness, twitching or atrophy of the

tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

neurologists at some point? Anyone with occasionally elevated pyruvate

but not lactate? Neurologist suggested (again) I take antioxidant

cocktail, particularly CoQ10. This can be rather expensive, so can

anyone suggest a place to get it (and possibly other supplements) at

reasonable cost, but still good quality? What doses are people taking

it at? Read that Idebenone (derivative of CoQ10) is cheaper and

possibly more effective than CoQ10. Anyone using it instead?

Thanks for any feedback

Randall

[Guest guest]

Randall

Neither my lactate or pryruvate are outside the normal range, but the

ratio is abnormal and was felt to be significant.

laurie

>

> ,

>

> Thanks for the reply. Is Dr. Cohen your doctor? Yes, I read the same

> thing about pyruvate. Mentioned this to my neuro and he conceded that

> lactate is usually elevated in MM but said it doesn't have to be. Think he

> was under the false impression that lactate had been elevated in the past,

> but the highest it has been was at the very top of the normal range. My

> pyruvate isn't very elevated on most recent test anyway. This is why I am

> skeptical of dx. Unfortunately the alternative of ALS or something like it

> isn't very appealing.

>

> Randall

>

> Re: First time poster - questionable diagnosis and

> have some questions

>

>

> Randall - I have recently been diagnosed with MM on the basis of

> clinical signs and symptoms, plus an abnormal lactate/pyruvate ratio

> (despite a normal skin biopsy). I hope I'm not speaking beyond my

> rather newly-acquired knowledge about MM, but my understanding, from

> Dr. Cohen at the Cleveland Clinic, is that an elevated pyruvate level

> is meaningless in the absence of an abnormal lactate level. Also,

> among a bunch of other symptoms, I have fluctuating muscle

> weakness/aches and rather pronounced tremors, which I'm in the process

> of investigating with doctors. I'm about to see a " movement

> specialist, " whom I believe will be investigating the possibility of

> " parkinson's related to " the MM. Again - I'm no expert, but my

> understanding is that having MM can precipitate movement disorders.

>

>

> >

> > Hi,

> >

> > Just joined and this is my first post. Have been having muscle

> problems

> > for years and one neurologist (out of the many I've seen) thought I

> > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > recently because of increase in symptoms and he again reiterated that

> he

> > thinks I might have MM. The evidence for this diagnosis is pretty

> > spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

> > proliferation and possible excess lipid (disputed by 2 other hospitals

> > that reviewed it and biopsy in 88 was considered normal), slightly

> > reduced NADH on respiratory enzyme study of biopsy and an occasionally

> > elevated serum pyruvate level (but lactate has never been clearly

> > elevated).

> >

> > I have had mild, fluctuating muscle weakness going back about 25

> years,

> > as well as intermittent problems swallowing and with speech, and even

> > breathing (with fluctuating pulmonary studies). In the 80's I had 2

> > EMGs that suggested ALS or motor neuron disease but most EMGS,

> including

> > the most recent ones, have been basically normal. However, I have a

> lot

> > of twitching and possibly some atrophy, so am concerned I have ALS or

> > some motor neuron disease rather than MM. Of most concern is noticing

> > what appears to be changes in surface of tongue - increased

> irregularity

> > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > the MM dx (as where other neurologists back in the 90's when this neuro

> > first suggested it. This neuro is a neuromuscular specialist who now

> > heads an MDA clinic.

> >

> > So with this long-winded introduction, would like to ask these

> > questions: Anyone with MM have weakness, twitching or atrophy of the

> > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > neurologists at some point? Anyone with occasionally elevated pyruvate

> > but not lactate? Neurologist suggested (again) I take antioxidant

> > cocktail, particularly CoQ10. This can be rather expensive, so can

> > anyone suggest a place to get it (and possibly other supplements) at

> > reasonable cost, but still good quality? What doses are people taking

> > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > possibly more effective than CoQ10. Anyone using it instead?

> >

> > Thanks for any feedback

> >

> > Randall

> >

> >

> >

[Guest guest]

--- Randall Bosin ranbo1@...> wrote:

> ,

>

> Thanks for the reply. Is Dr. Cohen your doctor?

> Yes, I read the same thing about pyruvate.

> Mentioned this to my neuro and he conceded that

> lactate is usually elevated in MM but said it

> doesn't have to be.

CoQ10 is almost always low in adults with mito.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

Laurie,

Believe even my ratio is in the normal range, which makes me even more skeptical

of this dx.

Randall

Re: First time poster - questionable diagnosis and

> have some questions

>

>

> Randall - I have recently been diagnosed with MM on the basis of

> clinical signs and symptoms, plus an abnormal lactate/pyruvate ratio

> (despite a normal skin biopsy). I hope I'm not speaking beyond my

> rather newly-acquired knowledge about MM, but my understanding, from

> Dr. Cohen at the Cleveland Clinic, is that an elevated pyruvate level

> is meaningless in the absence of an abnormal lactate level. Also,

> among a bunch of other symptoms, I have fluctuating muscle

> weakness/aches and rather pronounced tremors, which I'm in the process

> of investigating with doctors. I'm about to see a " movement

> specialist, " whom I believe will be investigating the possibility of

> " parkinson's related to " the MM. Again - I'm no expert, but my

> understanding is that having MM can precipitate movement disorders.

>

>

> >

> > Hi,

> >

> > Just joined and this is my first post. Have been having muscle

> problems

> > for years and one neurologist (out of the many I've seen) thought I

> > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > recently because of increase in symptoms and he again reiterated that

> he

> > thinks I might have MM. The evidence for this diagnosis is pretty

> > spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

> > proliferation and possible excess lipid (disputed by 2 other hospitals

> > that reviewed it and biopsy in 88 was considered normal), slightly

> > reduced NADH on respiratory enzyme study of biopsy and an occasionally

> > elevated serum pyruvate level (but lactate has never been clearly

> > elevated).

> >

> > I have had mild, fluctuating muscle weakness going back about 25

> years,

> > as well as intermittent problems swallowing and with speech, and even

> > breathing (with fluctuating pulmonary studies). In the 80's I had 2

> > EMGs that suggested ALS or motor neuron disease but most EMGS,

> including

> > the most recent ones, have been basically normal. However, I have a

> lot

> > of twitching and possibly some atrophy, so am concerned I have ALS or

> > some motor neuron disease rather than MM. Of most concern is noticing

> > what appears to be changes in surface of tongue - increased

> irregularity

> > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > the MM dx (as where other neurologists back in the 90's when this neuro

> > first suggested it. This neuro is a neuromuscular specialist who now

> > heads an MDA clinic.

> >

> > So with this long-winded introduction, would like to ask these

> > questions: Anyone with MM have weakness, twitching or atrophy of the

> > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > neurologists at some point? Anyone with occasionally elevated pyruvate

> > but not lactate? Neurologist suggested (again) I take antioxidant

> > cocktail, particularly CoQ10. This can be rather expensive, so can

> > anyone suggest a place to get it (and possibly other supplements) at

> > reasonable cost, but still good quality? What doses are people taking

> > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > possibly more effective than CoQ10. Anyone using it instead?

> >

> > Thanks for any feedback

> >

> > Randall

> >

> >

> >

[Guest guest]

,

Can you or anyone else specify what else should be in the cocktail and at what

does? Or is this written up somewhere?

Thanks

Randall

Re: First time poster - questionable diagnosis and have

some questions

Randall, I get ittermitent muscle weakness and when I am weaker and not

feeling as well I also get muscle fatigue of my tongue and swallowing muscles.

The mito cocktail works really well for me.

startfromscratch05 ranbo1@...> wrote: Hi,

Just joined and this is my first post. Have been having muscle problems

for years and one neurologist (out of the many I've seen) thought I

might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

recently because of increase in symptoms and he again reiterated that he

thinks I might have MM. The evidence for this diagnosis is pretty

spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

proliferation and possible excess lipid (disputed by 2 other hospitals

that reviewed it and biopsy in 88 was considered normal), slightly

reduced NADH on respiratory enzyme study of biopsy and an occasionally

elevated serum pyruvate level (but lactate has never been clearly

elevated).

I have had mild, fluctuating muscle weakness going back about 25 years,

as well as intermittent problems swallowing and with speech, and even

breathing (with fluctuating pulmonary studies). In the 80's I had 2

EMGs that suggested ALS or motor neuron disease but most EMGS, including

the most recent ones, have been basically normal. However, I have a lot

of twitching and possibly some atrophy, so am concerned I have ALS or

some motor neuron disease rather than MM. Of most concern is noticing

what appears to be changes in surface of tongue - increased irregularity

that I think is the kind of atrophy seen in ALS. I'm skeptical of

the MM dx (as where other neurologists back in the 90's when this neuro

first suggested it. This neuro is a neuromuscular specialist who now

heads an MDA clinic.

So with this long-winded introduction, would like to ask these

questions: Anyone with MM have weakness, twitching or atrophy of the

tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

neurologists at some point? Anyone with occasionally elevated pyruvate

but not lactate? Neurologist suggested (again) I take antioxidant

cocktail, particularly CoQ10. This can be rather expensive, so can

anyone suggest a place to get it (and possibly other supplements) at

reasonable cost, but still good quality? What doses are people taking

it at? Read that Idebenone (derivative of CoQ10) is cheaper and

possibly more effective than CoQ10. Anyone using it instead?

Thanks for any feedback

Randall

[Guest guest]

Thanks Laurie

Does Tishcon sell other supplements as well?

Randall

Re: First time poster - questionable diagnosis and have

some questions

Randell

Welcome to the group.

Yes, I have weakness and twitching, but not of the tongue.

Pyruvate and lactate can be normal, but the ratio can be abnormal or

as in your case, one normal and the other abnormal, but again, it is

the ratio that is most important.

I get my CoQ10 from Tishcon. If you have mito and call them, you can

get a discount. It is still expensive, but this kind is more

bioavailable, so more CoQ gets into the system. I am probably not the

norm, but I take 240 mg. four times a day or a total of 960 mg per

day. Some docs are now saying that unless you take enough, you might

as well not waste your money. Others say that you should take 5-10 mg.

per kilo of bosy weight. My personal experience is that I noticed

changes when I got up to that level.

laurie

>

> Hi,

>

> Just joined and this is my first post. Have been having muscle problems

> for years and one neurologist (out of the many I've seen) thought I

> might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> recently because of increase in symptoms and he again reiterated that he

> thinks I might have MM. The evidence for this diagnosis is pretty

> spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

> proliferation and possible excess lipid (disputed by 2 other hospitals

> that reviewed it and biopsy in 88 was considered normal), slightly

> reduced NADH on respiratory enzyme study of biopsy and an occasionally

> elevated serum pyruvate level (but lactate has never been clearly

> elevated).

>

> I have had mild, fluctuating muscle weakness going back about 25 years,

> as well as intermittent problems swallowing and with speech, and even

> breathing (with fluctuating pulmonary studies). In the 80's I had 2

> EMGs that suggested ALS or motor neuron disease but most EMGS, including

> the most recent ones, have been basically normal. However, I have a lot

> of twitching and possibly some atrophy, so am concerned I have ALS or

> some motor neuron disease rather than MM. Of most concern is noticing

> what appears to be changes in surface of tongue - increased irregularity

> that I think is the kind of atrophy seen in ALS. I'm skeptical of

> the MM dx (as where other neurologists back in the 90's when this neuro

> first suggested it. This neuro is a neuromuscular specialist who now

> heads an MDA clinic.

>

> So with this long-winded introduction, would like to ask these

> questions: Anyone with MM have weakness, twitching or atrophy of the

> tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> neurologists at some point? Anyone with occasionally elevated pyruvate

> but not lactate? Neurologist suggested (again) I take antioxidant

> cocktail, particularly CoQ10. This can be rather expensive, so can

> anyone suggest a place to get it (and possibly other supplements) at

> reasonable cost, but still good quality? What doses are people taking

> it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> possibly more effective than CoQ10. Anyone using it instead?

>

> Thanks for any feedback

>

> Randall

>

>

>

[Guest guest]

Randall, I'm also finding the diagnostic process very lengthy and

frustrating. As is usual, it took years for anyone to even consider

the possibility of mito, and then the diagnosis was made as much on

the basis of ruling out other possibilities such as MS, etc. as on the

positive evidence. But it does explain a heck of a lot! Dr. Cohen

is a pediatric neurologist at the Cleveland Clinic who has a

sub-specialty in mito - generally, he focusses on children, but will

occasionally see adults. You can find articles that he has written

about mito on the internet. I was very impressed with him and

(unfortunately) feel confident in his diagnosis for me. As you may be

able to tell from my other posts, though, I'm still trying to figure

out who " my doctor " is. Dr. Cohen has a remarkably full schedule and

has already advised that he will not have time to follow my case.

> >

> > Hi,

> >

> > Just joined and this is my first post. Have been having muscle

problems

> > for years and one neurologist (out of the many I've seen) thought I

> > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > recently because of increase in symptoms and he again reiterated

that he

> > thinks I might have MM. The evidence for this diagnosis is pretty

> > spotty - a questionable finding on muscle biopsy in 95 of

mitochondrial

> > proliferation and possible excess lipid (disputed by 2 other

hospitals

> > that reviewed it and biopsy in 88 was considered normal), slightly

> > reduced NADH on respiratory enzyme study of biopsy and an

occasionally

> > elevated serum pyruvate level (but lactate has never been clearly

> > elevated).

> >

> > I have had mild, fluctuating muscle weakness going back about 25

> years,

> > as well as intermittent problems swallowing and with speech, and

even

> > breathing (with fluctuating pulmonary studies). In the 80's I had 2

> > EMGs that suggested ALS or motor neuron disease but most EMGS,

including

> > the most recent ones, have been basically normal. However, I

have a lot

> > of twitching and possibly some atrophy, so am concerned I have

ALS or

> > some motor neuron disease rather than MM. Of most concern is

noticing

> > what appears to be changes in surface of tongue - increased

irregularity

> > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > the MM dx (as where other neurologists back in the 90's when

this neuro

> > first suggested it. This neuro is a neuromuscular specialist

who now

> > heads an MDA clinic.

> >

> > So with this long-winded introduction, would like to ask these

> > questions: Anyone with MM have weakness, twitching or atrophy

of the

> > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > neurologists at some point? Anyone with occasionally elevated

pyruvate

> > but not lactate? Neurologist suggested (again) I take antioxidant

> > cocktail, particularly CoQ10. This can be rather expensive, so can

> > anyone suggest a place to get it (and possibly other supplements) at

> > reasonable cost, but still good quality? What doses are people

taking

> > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > possibly more effective than CoQ10. Anyone using it instead?

> >

> > Thanks for any feedback

> >

> > Randall

> >

> >

> >

[Guest guest]

Laurie, thanks again. I'll take this info with me to the movement

specialist.

> > >

> > > Hi,

> > >

> > > Just joined and this is my first post. Have been having muscle

problems

> > > for years and one neurologist (out of the many I've seen) thought I

> > > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > > recently because of increase in symptoms and he again

reiterated that he

> > > thinks I might have MM. The evidence for this diagnosis is pretty

> > > spotty - a questionable finding on muscle biopsy in 95 of

mitochondrial

> > > proliferation and possible excess lipid (disputed by 2 other

hospitals

> > > that reviewed it and biopsy in 88 was considered normal), slightly

> > > reduced NADH on respiratory enzyme study of biopsy and an

occasionally

> > > elevated serum pyruvate level (but lactate has never been clearly

> > > elevated).

> > >

> > > I have had mild, fluctuating muscle weakness going back about 25

> > years,

> > > as well as intermittent problems swallowing and with speech,

and even

> > > breathing (with fluctuating pulmonary studies). In the 80's I

had 2

> > > EMGs that suggested ALS or motor neuron disease but most EMGS,

including

> > > the most recent ones, have been basically normal. However, I

have a lot

> > > of twitching and possibly some atrophy, so am concerned I have

ALS or

> > > some motor neuron disease rather than MM. Of most concern is

noticing

> > > what appears to be changes in surface of tongue - increased

irregularity

> > > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > > the MM dx (as where other neurologists back in the 90's when

this neuro

> > > first suggested it. This neuro is a neuromuscular specialist

who now

> > > heads an MDA clinic.

> > >

> > > So with this long-winded introduction, would like to ask these

> > > questions: Anyone with MM have weakness, twitching or atrophy

of the

> > > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > > neurologists at some point? Anyone with occasionally elevated

pyruvate

> > > but not lactate? Neurologist suggested (again) I take antioxidant

> > > cocktail, particularly CoQ10. This can be rather expensive, so can

> > > anyone suggest a place to get it (and possibly other

supplements) at

> > > reasonable cost, but still good quality? What doses are people

taking

> > > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > > possibly more effective than CoQ10. Anyone using it instead?

> > >

> > > Thanks for any feedback

> > >

> > > Randall

> > >

> > >

> > >

[Guest guest]

--- Randall Bosin ranbo1@...> wrote:

> ,

>

> Can you or anyone else specify what else should be

> in the cocktail and at what does? Or is this

> written up somewhere?

Look at www.umdf.org for signs and symptoms along with labs.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

Randall

Go to to find out the other things sold by Tishcon. You

have to call to get the CoQ at a mito discount, but I order the other

things at epic4health.

laurie

>

> Thanks Laurie

>

> Does Tishcon sell other supplements as well?

>

> Randall

>

> Re: First time poster - questionable diagnosis and

> have some questions

>

>

> Randell

>

> Welcome to the group.

>

> Yes, I have weakness and twitching, but not of the tongue.

>

> Pyruvate and lactate can be normal, but the ratio can be abnormal or

> as in your case, one normal and the other abnormal, but again, it is

> the ratio that is most important.

>

> I get my CoQ10 from Tishcon. If you have mito and call them, you can

> get a discount. It is still expensive, but this kind is more

> bioavailable, so more CoQ gets into the system. I am probably not the

> norm, but I take 240 mg. four times a day or a total of 960 mg per

> day. Some docs are now saying that unless you take enough, you might

> as well not waste your money. Others say that you should take 5-10 mg.

> per kilo of bosy weight. My personal experience is that I noticed

> changes when I got up to that level.

>

> laurie

>

>

> >

> > Hi,

> >

> > Just joined and this is my first post. Have been having muscle

> problems

> > for years and one neurologist (out of the many I've seen) thought I

> > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > recently because of increase in symptoms and he again reiterated that

> he

> > thinks I might have MM. The evidence for this diagnosis is pretty

> > spotty - a questionable finding on muscle biopsy in 95 of

> mitochondrial

> > proliferation and possible excess lipid (disputed by 2 other hospitals

> > that reviewed it and biopsy in 88 was considered normal), slightly

> > reduced NADH on respiratory enzyme study of biopsy and an occasionally

> > elevated serum pyruvate level (but lactate has never been clearly

> > elevated).

> >

> > I have had mild, fluctuating muscle weakness going back about 25

> years,

> > as well as intermittent problems swallowing and with speech, and even

> > breathing (with fluctuating pulmonary studies). In the 80's I had 2

> > EMGs that suggested ALS or motor neuron disease but most EMGS,

> including

> > the most recent ones, have been basically normal. However, I have a

> lot

> > of twitching and possibly some atrophy, so am concerned I have ALS or

> > some motor neuron disease rather than MM. Of most concern is noticing

> > what appears to be changes in surface of tongue - increased

> irregularity

> > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > the MM dx (as where other neurologists back in the 90's when this

> neuro

> > first suggested it. This neuro is a neuromuscular specialist who now

> > heads an MDA clinic.

> >

> > So with this long-winded introduction, would like to ask these

> > questions: Anyone with MM have weakness, twitching or atrophy of the

> > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > neurologists at some point? Anyone with occasionally elevated

> pyruvate

> > but not lactate? Neurologist suggested (again) I take antioxidant

> > cocktail, particularly CoQ10. This can be rather expensive, so can

> > anyone suggest a place to get it (and possibly other supplements) at

> > reasonable cost, but still good quality? What doses are people taking

> > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > possibly more effective than CoQ10. Anyone using it instead?

> >

> > Thanks for any feedback

> >

> > Randall

> >

> >

> >

[Guest guest]

Hi, Randall,

I¹m relatively newly diagnosed, too-

Here¹s a link to Dr. Cohen¹s Primer on Mitochondrial Disease.

http://www.umdf.org/MITOCYTO.PDF>

Page 15 has his Mitochondrial Supplement ³Cocktail².

This document has been a huge resource for me and my husband as we try to

figure out what¹s happening to me and what will happen to our family.

Good luck!

Kathleen

> ,

>

> Can you or anyone else specify what else should be in the cocktail and at what

> does? Or is this written up somewhere?

>

> Thanks

>

> Randall

[Guest guest]

I was looking at some of my lactate/pyruvate ratios recently for a new doc.

There was one or two ratios in the normal range but more are abnormal. some are

abnormal by just a little bit. I used to have them taken every 6 months from

1997 till a few years ago (insurance issues hard to get to pay for). I have a

definite diagnosis of MELAS from a blood test. My symptoms are mild compared to

some other people but have progressed as I have gotten older. I am now 45.

Anyway, my now 13 yr old son had a lactic acid test in 1997 and 2002. Both

times his ratio has been normal. With blood drawn at the same time in Nov 2002

a blood test determined he also had MELAS. His symptoms are also mild and

include intestional dismobility where if he does not take the Carniqgel

regularly he gets severely constipated. He also has problems when he sleeps 20

hrs or more a day when he gets a virus or very fatiqued.

The ratio on the MELAS tests of the affected cells was only slightly higher for

my sisters test (24% vs 16 & 17%) for us but she developed severe symptoms going

into a 4 day coma when she was 31 and then again when she was 33. Talking with

the doctor her muscle biopsy indicated that her muscles were severely affected.

When I did my testing in 1997 a spinal tap showed alot higher concentration of

lactic acid than did my blood.

Also, I know from experience that lactic acid levels can change over time and

are also affected by the way a lab handles the blood.

Janet Sample

Re: First time poster - questionable diagnosis and

> have some questions

>

>

> Randall - I have recently been diagnosed with MM on the basis of

> clinical signs and symptoms, plus an abnormal lactate/pyruvate ratio

> (despite a normal skin biopsy). I hope I'm not speaking beyond my

> rather newly-acquired knowledge about MM, but my understanding, from

> Dr. Cohen at the Cleveland Clinic, is that an elevated pyruvate level

> is meaningless in the absence of an abnormal lactate level. Also,

> among a bunch of other symptoms, I have fluctuating muscle

> weakness/aches and rather pronounced tremors, which I'm in the process

> of investigating with doctors. I'm about to see a " movement

> specialist, " whom I believe will be investigating the possibility of

> " parkinson's related to " the MM. Again - I'm no expert, but my

> understanding is that having MM can precipitate movement disorders.

>

>

> >

> > Hi,

> >

> > Just joined and this is my first post. Have been having muscle

> problems

> > for years and one neurologist (out of the many I've seen) thought I

> > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > recently because of increase in symptoms and he again reiterated that

> he

> > thinks I might have MM. The evidence for this diagnosis is pretty

> > spotty - a questionable finding on muscle biopsy in 95 of

mitochondrial

> > proliferation and possible excess lipid (disputed by 2 other

hospitals

> > that reviewed it and biopsy in 88 was considered normal), slightly

> > reduced NADH on respiratory enzyme study of biopsy and an

occasionally

> > elevated serum pyruvate level (but lactate has never been clearly

> > elevated).

> >

> > I have had mild, fluctuating muscle weakness going back about 25

> years,

> > as well as intermittent problems swallowing and with speech, and even

> > breathing (with fluctuating pulmonary studies). In the 80's I had 2

> > EMGs that suggested ALS or motor neuron disease but most EMGS,

> including

> > the most recent ones, have been basically normal. However, I have a

> lot

> > of twitching and possibly some atrophy, so am concerned I have ALS or

> > some motor neuron disease rather than MM. Of most concern is

noticing

> > what appears to be changes in surface of tongue - increased

> irregularity

> > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > the MM dx (as where other neurologists back in the 90's when this

neuro

> > first suggested it. This neuro is a neuromuscular specialist who now

> > heads an MDA clinic.

> >

> > So with this long-winded introduction, would like to ask these

> > questions: Anyone with MM have weakness, twitching or atrophy of the

> > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > neurologists at some point? Anyone with occasionally elevated

pyruvate

> > but not lactate? Neurologist suggested (again) I take antioxidant

> > cocktail, particularly CoQ10. This can be rather expensive, so can

> > anyone suggest a place to get it (and possibly other supplements) at

> > reasonable cost, but still good quality? What doses are people

taking

> > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > possibly more effective than CoQ10. Anyone using it instead?

> >

> > Thanks for any feedback

> >

> > Randall

> >

> >

> >

[Guest guest]

Hi Laurie, I went to check out CoQ10 on Tishcon and Epic websites. Talked with

someone at Epic who says they give a small discount to Mito persons, haven't

been able to reach anyone at Tishcon so far. Does Tishcon sell CoQ10 directly

or only through places like Epic? Their website lists Epic and a few other

sites as how to order the CoQ10. Epic's is very expensive, even with discount,

though he claimed it is far superior to any other brand because it is water

soluble rather than the usual fat soluble. Does this sound right? Money is an

issue, especially for something that may or may not help a condition which I

still am dubious that I actually have!

Thanks

Randall

Re: First time poster - questionable diagnosis and have

some questions

Randell

Welcome to the group.

Yes, I have weakness and twitching, but not of the tongue.

Pyruvate and lactate can be normal, but the ratio can be abnormal or

as in your case, one normal and the other abnormal, but again, it is

the ratio that is most important.

I get my CoQ10 from Tishcon. If you have mito and call them, you can

get a discount. It is still expensive, but this kind is more

bioavailable, so more CoQ gets into the system. I am probably not the

norm, but I take 240 mg. four times a day or a total of 960 mg per

day. Some docs are now saying that unless you take enough, you might

as well not waste your money. Others say that you should take 5-10 mg.

per kilo of bosy weight. My personal experience is that I noticed

changes when I got up to that level.

laurie

>

> Hi,

>

> Just joined and this is my first post. Have been having muscle problems

> for years and one neurologist (out of the many I've seen) thought I

> might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> recently because of increase in symptoms and he again reiterated that he

> thinks I might have MM. The evidence for this diagnosis is pretty

> spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

> proliferation and possible excess lipid (disputed by 2 other hospitals

> that reviewed it and biopsy in 88 was considered normal), slightly

> reduced NADH on respiratory enzyme study of biopsy and an occasionally

> elevated serum pyruvate level (but lactate has never been clearly

> elevated).

>

> I have had mild, fluctuating muscle weakness going back about 25 years,

> as well as intermittent problems swallowing and with speech, and even

> breathing (with fluctuating pulmonary studies). In the 80's I had 2

> EMGs that suggested ALS or motor neuron disease but most EMGS, including

> the most recent ones, have been basically normal. However, I have a lot

> of twitching and possibly some atrophy, so am concerned I have ALS or

> some motor neuron disease rather than MM. Of most concern is noticing

> what appears to be changes in surface of tongue - increased irregularity

> that I think is the kind of atrophy seen in ALS. I'm skeptical of

> the MM dx (as where other neurologists back in the 90's when this neuro

> first suggested it. This neuro is a neuromuscular specialist who now

> heads an MDA clinic.

>

> So with this long-winded introduction, would like to ask these

> questions: Anyone with MM have weakness, twitching or atrophy of the

> tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> neurologists at some point? Anyone with occasionally elevated pyruvate

> but not lactate? Neurologist suggested (again) I take antioxidant

> cocktail, particularly CoQ10. This can be rather expensive, so can

> anyone suggest a place to get it (and possibly other supplements) at

> reasonable cost, but still good quality? What doses are people taking

> it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> possibly more effective than CoQ10. Anyone using it instead?

>

> Thanks for any feedback

>

> Randall

>

>

>

[Guest guest]

Randall

Epic is actually the sales department for Tishcon. I call as I have

not been able to get the discount by ordering from Epic on-line. I get

a 10% discount (I think that is what it is). It is expensive, but it

is more bio-available (soluable in water). It has worked best for me,

but not everyone has had the same results. It didn't actually make me

better, but has slowed the progression of the disease a great deal. I

had to go off of it for a muscle biopsy and then I really realized how

much it was helping me.

laurie

>

>

>

>

>

>

> Hi Laurie, I went to check out CoQ10 on Tishcon and Epic websites. Talked

> with someone at Epic who says they give a small discount to Mito persons,

> haven't been able to reach anyone at Tishcon so far. Does Tishcon sell CoQ10

> directly or only through places like Epic? Their website lists Epic and a

> few other sites as how to order the CoQ10. Epic's is very expensive, even

> with discount, though he claimed it is far superior to any other brand

> because it is water soluble rather than the usual fat soluble. Does this

> sound right? Money is an issue, especially for something that may or may not

> help a condition which I still am dubious that I actually have!

>

> Thanks

>

>

> Randall

> Re: First time poster - questionable diagnosis and have

> some questions

>

> Randell

>

> Welcome to the group.

>

> Yes, I have weakness and twitching, but not of the tongue.

>

> Pyruvate and lactate can be normal, but the ratio can be abnormal or

> as in your case, one normal and the other abnormal, but again, it is

> the ratio that is most important.

>

> I get my CoQ10 from Tishcon. If you have mito and call them, you can

> get a discount. It is still expensive, but this kind is more

> bioavailable, so more CoQ gets into the system. I am probably not the

> norm, but I take 240 mg. four times a day or a total of 960 mg per

> day. Some docs are now saying that unless you take enough, you might

> as well not waste your money. Others say that you should take 5-10 mg.

> per kilo of bosy weight. My personal experience is that I noticed

> changes when I got up to that level.

>

> laurie

>

>

> >

> > Hi,

> >

> > Just joined and this is my first post. Have been having muscle problems

> > for years and one neurologist (out of the many I've seen) thought I

> > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > recently because of increase in symptoms and he again reiterated that he

> > thinks I might have MM. The evidence for this diagnosis is pretty

> > spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

> > proliferation and possible excess lipid (disputed by 2 other hospitals

> > that reviewed it and biopsy in 88 was considered normal), slightly

> > reduced NADH on respiratory enzyme study of biopsy and an occasionally

> > elevated serum pyruvate level (but lactate has never been clearly

> > elevated).

> >

> > I have had mild, fluctuating muscle weakness going back about 25 years,

> > as well as intermittent problems swallowing and with speech, and even

> > breathing (with fluctuating pulmonary studies). In the 80's I had 2

> > EMGs that suggested ALS or motor neuron disease but most EMGS, including

> > the most recent ones, have been basically normal. However, I have a lot

> > of twitching and possibly some atrophy, so am concerned I have ALS or

> > some motor neuron disease rather than MM. Of most concern is noticing

> > what appears to be changes in surface of tongue - increased irregularity

> > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > the MM dx (as where other neurologists back in the 90's when this neuro

> > first suggested it. This neuro is a neuromuscular specialist who now

> > heads an MDA clinic.

> >

> > So with this long-winded introduction, would like to ask these

> > questions: Anyone with MM have weakness, twitching or atrophy of the

> > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > neurologists at some point? Anyone with occasionally elevated pyruvate

> > but not lactate? Neurologist suggested (again) I take antioxidant

> > cocktail, particularly CoQ10. This can be rather expensive, so can

> > anyone suggest a place to get it (and possibly other supplements) at

> > reasonable cost, but still good quality? What doses are people taking

> > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > possibly more effective than CoQ10. Anyone using it instead?

> >

> > Thanks for any feedback

> >

> > Randall

> >

> >

> >

[Guest guest]

Hi Randall,

It seems to me that some people in this group swear by Epic. (And I'm

pretty sure Tishcon is only sold through Epic). They feel that Epic is

more soluble, as you said, so they are using less and that it is

therefore not more expensive. Because of this, I tried Epic, too, but

I wasn't so sure that I could use that much less. Perhaps I didn't

give it enough time. Anyway, for better or worse I switched to

Puritan's Pride (which was the least expensive I could find online).

There is no question that it's helping me. It took awhile to kick in

though and I'm on a substantial dose (1000 mg/day). I'm not sure if

there is any way to do this other than experimenting for one's self

since we all seem a bit different. Good luck!

Best,

Shayna

p.s. I'm now trying to get Medicaid to pay for the CoQ10. If they

agree, you'll see a wildly exhilirated post from me, I'm sure. :-)

> >

> > Hi,

> >

> > Just joined and this is my first post. Have been having muscle

problems

> > for years and one neurologist (out of the many I've seen) thought I

> > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > recently because of increase in symptoms and he again

reiterated that he

> > thinks I might have MM. The evidence for this diagnosis is pretty

> > spotty - a questionable finding on muscle biopsy in 95 of

mitochondrial

> > proliferation and possible excess lipid (disputed by 2 other

hospitals

> > that reviewed it and biopsy in 88 was considered normal), slightly

> > reduced NADH on respiratory enzyme study of biopsy and an

occasionally

> > elevated serum pyruvate level (but lactate has never been clearly

> > elevated).

> >

> > I have had mild, fluctuating muscle weakness going back about

25 years,

> > as well as intermittent problems swallowing and with speech,

and even

> > breathing (with fluctuating pulmonary studies). In the 80's I

had 2

> > EMGs that suggested ALS or motor neuron disease but most EMGS,

including

> > the most recent ones, have been basically normal. However, I

have a lot

> > of twitching and possibly some atrophy, so am concerned I have

ALS or

> > some motor neuron disease rather than MM. Of most concern is

noticing

> > what appears to be changes in surface of tongue - increased

irregularity

> > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > the MM dx (as where other neurologists back in the 90's when

this neuro

> > first suggested it. This neuro is a neuromuscular specialist

who now

> > heads an MDA clinic.

> >

> > So with this long-winded introduction, would like to ask these

> > questions: Anyone with MM have weakness, twitching or atrophy

of the

> > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > neurologists at some point? Anyone with occasionally elevated

pyruvate

> > but not lactate? Neurologist suggested (again) I take antioxidant

> > cocktail, particularly CoQ10. This can be rather expensive, so can

> > anyone suggest a place to get it (and possibly other

supplements) at

> > reasonable cost, but still good quality? What doses are people

taking

> > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > possibly more effective than CoQ10. Anyone using it instead?

> >

> > Thanks for any feedback

> >

> > Randall

> >

> >

> >

[Guest guest]

Shayna,

Funny you mention Puritan's Pride. Just got my new catalogue today (have been

ordering various supplements from them for years, but not Q10) and with their

current 3 for 1 sale, seems the best price per mg. for CoQ10 I've found in a

little searching today; even cheaper than Beyond Century's powder CoQ10, which

is what I used to order. Since it has worked for you, even more tempted to go

with Puritan's during their sale. BTW, for anyone interested, good prices on

many supplements when they have this 3 for 1 sale, which will last a few months

probably. Rest of year prices are higher.

The Tishcon website lists several places to get their CoQ10, Epic being among

them. In pricing several of them, found places considerably cheaper. Swansons

priced significantly less for same stuff. If you take a lot per day, would get

to be damn expensive!

Give the prices, I'm tempted to go with Puritans or maybe even Idebenone, which

is far cheaper (especially in powder form). Surprised I haven't seen much if

any discussion of whether this is adequate substitute. Still need to research

it more, though. Internist thinks it can be substituted, neurologist thinks it

might, but isn't sure and said to play it safe, maybe better going with CoQ10.

Since it is SO much cheaper, the researchers should be looking into whether it

works as well or even better than CoQ10. Some people apparently take it along

with CoQ10.

That would be great if Medicaid would pay for it! How have you managed that?

Think I might look into having insurance pay for it as well, if a doc prescribes

it. I know you can count the cost of supplements recommended by a doctor for a

condition for programs like foodstamps and Section 8, which is nice, since you

can count the same supplement expenses for more than one program, and it can

make a big difference in the benefit amount. But getting Medicaid or other

insurance to pay for it sounds even better!

Randall

Re: First time poster - questionable diagnosis and have

some questions

Hi Randall,

It seems to me that some people in this group swear by Epic. (And I'm

pretty sure Tishcon is only sold through Epic). They feel that Epic is

more soluble, as you said, so they are using less and that it is

therefore not more expensive. Because of this, I tried Epic, too, but

I wasn't so sure that I could use that much less. Perhaps I didn't

give it enough time. Anyway, for better or worse I switched to

Puritan's Pride (which was the least expensive I could find online).

There is no question that it's helping me. It took awhile to kick in

though and I'm on a substantial dose (1000 mg/day). I'm not sure if

there is any way to do this other than experimenting for one's self

since we all seem a bit different. Good luck!

Best,

Shayna

p.s. I'm now trying to get Medicaid to pay for the CoQ10. If they

agree, you'll see a wildly exhilirated post from me, I'm sure. :-)

> >

> > Hi,

> >

> > Just joined and this is my first post. Have been having muscle

problems

> > for years and one neurologist (out of the many I've seen) thought I

> > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > recently because of increase in symptoms and he again

reiterated that he

> > thinks I might have MM. The evidence for this diagnosis is pretty

> > spotty - a questionable finding on muscle biopsy in 95 of

mitochondrial

> > proliferation and possible excess lipid (disputed by 2 other

hospitals

> > that reviewed it and biopsy in 88 was considered normal), slightly

> > reduced NADH on respiratory enzyme study of biopsy and an

occasionally

> > elevated serum pyruvate level (but lactate has never been clearly

> > elevated).

> >

> > I have had mild, fluctuating muscle weakness going back about

25 years,

> > as well as intermittent problems swallowing and with speech,

and even

> > breathing (with fluctuating pulmonary studies). In the 80's I

had 2

> > EMGs that suggested ALS or motor neuron disease but most EMGS,

including

> > the most recent ones, have been basically normal. However, I

have a lot

> > of twitching and possibly some atrophy, so am concerned I have

ALS or

> > some motor neuron disease rather than MM. Of most concern is

noticing

> > what appears to be changes in surface of tongue - increased

irregularity

> > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > the MM dx (as where other neurologists back in the 90's when

this neuro

> > first suggested it. This neuro is a neuromuscular specialist

who now

> > heads an MDA clinic.

> >

> > So with this long-winded introduction, would like to ask these

> > questions: Anyone with MM have weakness, twitching or atrophy

of the

> > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > neurologists at some point? Anyone with occasionally elevated

pyruvate

> > but not lactate? Neurologist suggested (again) I take antioxidant

> > cocktail, particularly CoQ10. This can be rather expensive, so can

> > anyone suggest a place to get it (and possibly other

supplements) at

> > reasonable cost, but still good quality? What doses are people

taking

> > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > possibly more effective than CoQ10. Anyone using it instead?

> >

> > Thanks for any feedback

> >

> > Randall

> >

> >

> >

[Guest guest]

Randall

Just a word of caution if looking for the Tishcon Q-gel. Places like

Swanson's sell it, but they also sell more other kinds than the

Tishcon, so read carefully. If I run out of my Z-gel, I will buy

Sundown's Q-gel by Tishcon, but have to read the fine (very fine) to

find out which one it is. It is the most expensive one they sell.

laurie

>

>

>

>

>

>

> Shayna,

>

> Funny you mention Puritan's Pride. Just got my new catalogue today (have

> been ordering various supplements from them for years, but not Q10) and with

> their current 3 for 1 sale, seems the best price per mg. for CoQ10 I've

> found in a little searching today; even cheaper than Beyond Century's powder

> CoQ10, which is what I used to order. Since it has worked for you, even more

> tempted to go with Puritan's during their sale. BTW, for anyone interested,

> good prices on many supplements when they have this 3 for 1 sale, which will

> last a few months probably. Rest of year prices are higher.

>

> The Tishcon website lists several places to get their CoQ10, Epic being

> among them. In pricing several of them, found places considerably cheaper.

> Swansons priced significantly less for same stuff. If you take a lot per

> day, would get to be damn expensive!

>

> Give the prices, I'm tempted to go with Puritans or maybe even Idebenone,

> which is far cheaper (especially in powder form). Surprised I haven't seen

> much if any discussion of whether this is adequate substitute. Still need to

> research it more, though. Internist thinks it can be substituted,

> neurologist thinks it might, but isn't sure and said to play it safe, maybe

> better going with CoQ10. Since it is SO much cheaper, the researchers should

> be looking into whether it works as well or even better than CoQ10. Some

> people apparently take it along with CoQ10.

>

> That would be great if Medicaid would pay for it! How have you managed

> that? Think I might look into having insurance pay for it as well, if a doc

> prescribes it. I know you can count the cost of supplements recommended by a

> doctor for a condition for programs like foodstamps and Section 8, which is

> nice, since you can count the same supplement expenses for more than one

> program, and it can make a big difference in the benefit amount. But getting

> Medicaid or other insurance to pay for it sounds even better!

>

> Randall

>

>

> Re: First time poster - questionable diagnosis and have

> some questions

>

> Hi Randall,

> It seems to me that some people in this group swear by Epic. (And I'm

> pretty sure Tishcon is only sold through Epic). They feel that Epic is

> more soluble, as you said, so they are using less and that it is

> therefore not more expensive. Because of this, I tried Epic, too, but

> I wasn't so sure that I could use that much less. Perhaps I didn't

> give it enough time. Anyway, for better or worse I switched to

> Puritan's Pride (which was the least expensive I could find online).

> There is no question that it's helping me. It took awhile to kick in

> though and I'm on a substantial dose (1000 mg/day). I'm not sure if

> there is any way to do this other than experimenting for one's self

> since we all seem a bit different. Good luck!

> Best,

> Shayna

> p.s. I'm now trying to get Medicaid to pay for the CoQ10. If they

> agree, you'll see a wildly exhilirated post from me, I'm sure. :-)

>

> > >

> > > Hi,

> > >

> > > Just joined and this is my first post. Have been having muscle

> problems

> > > for years and one neurologist (out of the many I've seen) thought I

> > > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > > recently because of increase in symptoms and he again

> reiterated that he

> > > thinks I might have MM. The evidence for this diagnosis is pretty

> > > spotty - a questionable finding on muscle biopsy in 95 of

> mitochondrial

> > > proliferation and possible excess lipid (disputed by 2 other

> hospitals

> > > that reviewed it and biopsy in 88 was considered normal), slightly

> > > reduced NADH on respiratory enzyme study of biopsy and an

> occasionally

> > > elevated serum pyruvate level (but lactate has never been clearly

> > > elevated).

> > >

> > > I have had mild, fluctuating muscle weakness going back about

> 25 years,

> > > as well as intermittent problems swallowing and with speech,

> and even

> > > breathing (with fluctuating pulmonary studies). In the 80's I

> had 2

> > > EMGs that suggested ALS or motor neuron disease but most EMGS,

> including

> > > the most recent ones, have been basically normal. However, I

> have a lot

> > > of twitching and possibly some atrophy, so am concerned I have

> ALS or

> > > some motor neuron disease rather than MM. Of most concern is

> noticing

> > > what appears to be changes in surface of tongue - increased

> irregularity

> > > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > > the MM dx (as where other neurologists back in the 90's when

> this neuro

> > > first suggested it. This neuro is a neuromuscular specialist

> who now

> > > heads an MDA clinic.

> > >

> > > So with this long-winded introduction, would like to ask these

> > > questions: Anyone with MM have weakness, twitching or atrophy

> of the

> > > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > > neurologists at some point? Anyone with occasionally elevated

> pyruvate

> > > but not lactate? Neurologist suggested (again) I take antioxidant

> > > cocktail, particularly CoQ10. This can be rather expensive, so can

> > > anyone suggest a place to get it (and possibly other

> supplements) at

> > > reasonable cost, but still good quality? What doses are people

> taking

> > > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > > possibly more effective than CoQ10. Anyone using it instead?

> > >

> > > Thanks for any feedback

> > >

> > > Randall

> > >

> > >

> > >

[Guest guest]

For me Qgel by Tischon actually works better than puritans pride but I know that

is not the same for everyone. I actually take far less than the recommended

5-10 mg per kilo of body weight per day. This may vary for others also--some

people do not notice a difference till they take large amounts of Q10. I did

find I myself can take less of the Qgel than puritans Q10.

The reason I am writing is I saw your reference to medicaid paying for Q10. I

just recently received payment for Qgel from my military " insurance " for

purchases in 2004 and 2005. I did have it paid for all but my 25% copay and

deductible in 2003 but they changed administrators and started denying it.

After going round and round with them saying it was a vitamin supplement only,

did not have a NDC number for a prescription drug, it was not manufactured

anymore, etc I finally involved my congressman. Within 2 weeks of sending it to

my congressman's office I received a call from a gentleman at ExpressScripts who

handles the prescription drugs. Said would be processing the claim. Then

received a phone call and email saying they cannot process it because Epic does

not have a pharmacy number, they are sending it back to the congressman's

office. So next day I receive a phone call to fax their office an authorization

to get my medical records. About 2 weeks later receive a phone message from

congressman's office I should be getting paid for the Qgel.

Now, I have not submitted my receipts for the Nov 2005 to present yet but

hopefully at least Tricare North region knows to pay for Qgel as an orphan drug.

Janet Sample

Re: First time poster - questionable diagnosis and have

some questions

Hi Randall,

It seems to me that some people in this group swear by Epic. (And I'm

pretty sure Tishcon is only sold through Epic). They feel that Epic is

more soluble, as you said, so they are using less and that it is

therefore not more expensive. Because of this, I tried Epic, too, but

I wasn't so sure that I could use that much less. Perhaps I didn't

give it enough time. Anyway, for better or worse I switched to

Puritan's Pride (which was the least expensive I could find online).

There is no question that it's helping me. It took awhile to kick in

though and I'm on a substantial dose (1000 mg/day). I'm not sure if

there is any way to do this other than experimenting for one's self

since we all seem a bit different. Good luck!

Best,

Shayna

p.s. I'm now trying to get Medicaid to pay for the CoQ10. If they

agree, you'll see a wildly exhilirated post from me, I'm sure. :-)

> >

> > Hi,

> >

> > Just joined and this is my first post. Have been having muscle

problems

> > for years and one neurologist (out of the many I've seen) thought I

> > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > recently because of increase in symptoms and he again

reiterated that he

> > thinks I might have MM. The evidence for this diagnosis is pretty

> > spotty - a questionable finding on muscle biopsy in 95 of

mitochondrial

> > proliferation and possible excess lipid (disputed by 2 other

hospitals

> > that reviewed it and biopsy in 88 was considered normal), slightly

> > reduced NADH on respiratory enzyme study of biopsy and an

occasionally

> > elevated serum pyruvate level (but lactate has never been clearly

> > elevated).

> >

> > I have had mild, fluctuating muscle weakness going back about

25 years,

> > as well as intermittent problems swallowing and with speech,

and even

> > breathing (with fluctuating pulmonary studies). In the 80's I

had 2

> > EMGs that suggested ALS or motor neuron disease but most EMGS,

including

> > the most recent ones, have been basically normal. However, I

have a lot

> > of twitching and possibly some atrophy, so am concerned I have

ALS or

> > some motor neuron disease rather than MM. Of most concern is

noticing

> > what appears to be changes in surface of tongue - increased

irregularity

> > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > the MM dx (as where other neurologists back in the 90's when

this neuro

> > first suggested it. This neuro is a neuromuscular specialist

who now

> > heads an MDA clinic.

> >

> > So with this long-winded introduction, would like to ask these

> > questions: Anyone with MM have weakness, twitching or atrophy

of the

> > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > neurologists at some point? Anyone with occasionally elevated

pyruvate

> > but not lactate? Neurologist suggested (again) I take antioxidant

> > cocktail, particularly CoQ10. This can be rather expensive, so can

> > anyone suggest a place to get it (and possibly other

supplements) at

> > reasonable cost, but still good quality? What doses are people

taking

> > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > possibly more effective than CoQ10. Anyone using it instead?

> >

> > Thanks for any feedback

> >

> > Randall

> >

> >

> >

[Guest guest]

Hi Randall,

In Massachusetts, to get CoQ10 and other co-factors covered by

Medicaid your physician has to file for prior approval. If it's

denied, I think you can appeal. I'm still waiting for the first round

of paperwork to get processed. As I told Ann-Marie, it's hit or miss

whether they will or won't.

One thing MassHealth (our Medicaid plan) doesn't announce is that you

can get most vitamins and minerals paid for by Medicaid (at least in

Massachusetts)with a physician prescription. This does not need prior

approval. In fact, there is a long list of over-the-counter things

that MassHealth will pay for with a prescription.

Yes, I'm saving my receipts to get a reduction in my Section 8 rent

next year. But I agree that it would be a lot better if Medicaid would

just foot the bill. I'm really afraid of going broke with this stuff.

(I just started the cocktail recently and am only a few, but very

expensive, ingredients so far).

BTW, if you haven't started CoQ10 yet, I would suggest starting

slowly. I noticed that each time I increased the dose I couldn't

sleep. Then after a couple of days I adjusted. Now I take it only in

the morning and with lunch--never late in the day. Just my experience.

Best,

Shayna

p.s.What state do you live in? Are you concerned about changes in the

Section 8 program?

> > >

> > > Hi,

> > >

> > > Just joined and this is my first post. Have been having muscle

> problems

> > > for years and one neurologist (out of the many I've seen)

thought I

> > > might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> > > recently because of increase in symptoms and he again

> reiterated that he

> > > thinks I might have MM. The evidence for this diagnosis is pretty

> > > spotty - a questionable finding on muscle biopsy in 95 of

> mitochondrial

> > > proliferation and possible excess lipid (disputed by 2 other

> hospitals

> > > that reviewed it and biopsy in 88 was considered normal), slightly

> > > reduced NADH on respiratory enzyme study of biopsy and an

> occasionally

> > > elevated serum pyruvate level (but lactate has never been clearly

> > > elevated).

> > >

> > > I have had mild, fluctuating muscle weakness going back about

> 25 years,

> > > as well as intermittent problems swallowing and with speech,

> and even

> > > breathing (with fluctuating pulmonary studies). In the 80's I

> had 2

> > > EMGs that suggested ALS or motor neuron disease but most EMGS,

> including

> > > the most recent ones, have been basically normal. However, I

> have a lot

> > > of twitching and possibly some atrophy, so am concerned I have

> ALS or

> > > some motor neuron disease rather than MM. Of most concern is

> noticing

> > > what appears to be changes in surface of tongue - increased

> irregularity

> > > that I think is the kind of atrophy seen in ALS. I'm skeptical of

> > > the MM dx (as where other neurologists back in the 90's when

> this neuro

> > > first suggested it. This neuro is a neuromuscular specialist

> who now

> > > heads an MDA clinic.

> > >

> > > So with this long-winded introduction, would like to ask these

> > > questions: Anyone with MM have weakness, twitching or atrophy

> of the

> > > tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> > > neurologists at some point? Anyone with occasionally elevated

> pyruvate

> > > but not lactate? Neurologist suggested (again) I take antioxidant

> > > cocktail, particularly CoQ10. This can be rather expensive, so can

> > > anyone suggest a place to get it (and possibly other

> supplements) at

> > > reasonable cost, but still good quality? What doses are people

> taking

> > > it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> > > possibly more effective than CoQ10. Anyone using it instead?

> > >

> > > Thanks for any feedback

> > >

> > > Randall

> > >

> > >

> > >