Re: I am not sure what to think!!!!

[Guest guest]

Dawn

It sounds like you are in the place I was after several frozen biopsies. I

guess I wouldn't rule out mito without having a fresh biopsy with OXPHOS

testing and the opinion of one of the mito specialsists. My mito wasn't

identified with the fresh biopsy with immediate OXPHOS testing. I ended up

going to see Dr. Shoffner. Have you tried an MDA clinic? Not all are up on

mito, but some have gotten very good.

Hugs,

laurie

>

> Reply-To:

> Date: Fri, 18 Feb 2005 18:30:30 -0000

> To:

> Subject: I am not sure what to think!!!!

>

>

>

> I was just informed by a Dr at Mayo that he does not htink I have

> Mito. The neurologist up there does not think I have a neurological

> disease. Every neurologist I have seen has a different

> opinion...cervical stenosis, mylenopathy, degenerative neurological

> disoder, metabolic disorder, conversion disorder....Here are all of

> my for sure diagnosis...

>

> Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

> gastroparesis and allergies

>

> I have CFS/FM type symptoms. My gait is abnormal and gets worse with

> exertion...myastania like. The more that I do the worse my muscle

> control is and I become weak and tremor. I also become SOB and

> nautious. My muscle aches and pains have increased.

>

> I ahve been told that I have mitochondrial dysfunction which is

> probably secondary to another disease process..which noone has been

> able to figure out.

>

> My mito labs are all normal, but not done fasting or during a

> crisis. My frozen muscle biopsy shows mild myopathy, microfiber

> degeneration and some acummulation of mitochodria and lipids.

>

> WHat was interesting is all of my vitamins were very high showing

> good nutrition however I have low Co Q 10, creatine and thiamin

> which all have to do with energy metablism.

>

> My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

> felt this is good. I have an autoimmune disease which is causing my

> mitochodrial problem. But as I though about it more I am not

> convinced that the opposite is true. I still feel this could be mito

> with a secondary autoimmune disease. I have research autoimmune

> diseases and I do not fit any of the criteria. I haveno evidence of

> muscle inflammation either!!!

>

> I look at family history and the health problem of my children and I

> am not convinced it is not mito. I wish I was.

>

> What do others think? Any input would be appreciated!!!!!

>

> Thank you,

>

> Dawn Anich

>

>

>

>

>

>

> 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]

---Thanks for the reply Laurie! The MDA Dr is diagnosed me with a

conversion reaction. I think a fresh biopsy is my next step. But

maybe I should wait a while and see how my symptoms evolve and what

else shows up. It seems that every six months somethig else comes up.

I give you soo much credit for pursuing mito without the support and

knowledge that we have these days. It is still very limited, but

much better than when you were seeking a diagnosi. We all appreciate

the knowleadge and perserverance of all of you mito pioneers.

I am just not feeling very patient at the moment. I feel like I know

less now and have more questions than I did before. I feel very

frustrated.

Dawn Anich

In , Laureta Fitzgerald

wrote:

> Dawn

>

> It sounds like you are in the place I was after several frozen

biopsies. I

> guess I wouldn't rule out mito without having a fresh biopsy with

OXPHOS

> testing and the opinion of one of the mito specialsists. My mito

wasn't

> identified with the fresh biopsy with immediate OXPHOS testing. I

ended up

> going to see Dr. Shoffner. Have you tried an MDA clinic? Not all

are up on

> mito, but some have gotten very good.

>

> Hugs,

> laurie

>

> > From: " dawnanich "

> > Reply-To:

> > Date: Fri, 18 Feb 2005 18:30:30 -0000

> > To:

> > Subject: I am not sure what to think!!!!

> >

> >

> >

> > I was just informed by a Dr at Mayo that he does not htink I have

> > Mito. The neurologist up there does not think I have a

neurological

> > disease. Every neurologist I have seen has a different

> > opinion...cervical stenosis, mylenopathy, degenerative

neurological

> > disoder, metabolic disorder, conversion disorder....Here are all

of

> > my for sure diagnosis...

> >

> > Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

> > gastroparesis and allergies

> >

> > I have CFS/FM type symptoms. My gait is abnormal and gets worse

with

> > exertion...myastania like. The more that I do the worse my muscle

> > control is and I become weak and tremor. I also become SOB and

> > nautious. My muscle aches and pains have increased.

> >

> > I ahve been told that I have mitochondrial dysfunction which is

> > probably secondary to another disease process..which noone has

been

> > able to figure out.

> >

> > My mito labs are all normal, but not done fasting or during a

> > crisis. My frozen muscle biopsy shows mild myopathy, microfiber

> > degeneration and some acummulation of mitochodria and lipids.

> >

> > WHat was interesting is all of my vitamins were very high showing

> > good nutrition however I have low Co Q 10, creatine and thiamin

> > which all have to do with energy metablism.

> >

> > My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

> > felt this is good. I have an autoimmune disease which is causing

my

> > mitochodrial problem. But as I though about it more I am not

> > convinced that the opposite is true. I still feel this could be

mito

> > with a secondary autoimmune disease. I have research autoimmune

> > diseases and I do not fit any of the criteria. I haveno evidence

of

> > muscle inflammation either!!!

> >

> > I look at family history and the health problem of my children

and I

> > am not convinced it is not mito. I wish I was.

> >

> > What do others think? Any input would be appreciated!!!!!

> >

> > Thank you,

> >

> > Dawn Anich

> >

> >

> >

> >

> >

> >

> > 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 felt able to " bite the bullet " and go for a fresh muscle biopsy,

and tacked it on to a family vacation because of the travel

involved. It saved me a lot of time and trouble I believe - the

results were definitive for me.

I had many neuros tell me " nothing's wrong with you " , but the fresh

muscle biopsy proved different.

Do you have abnormal lactate/pyruvate blood tests? To me, that's the

only other test that " proves " I have a mitochondrial disease - all

other tests were normal. I have near normal CoQ10 and carnitine

levels.

Take care,

RH

> > Dawn

> >

> > It sounds like you are in the place I was after several frozen

> biopsies. I

> > guess I wouldn't rule out mito without having a fresh biopsy

with

> OXPHOS

> > testing and the opinion of one of the mito specialsists. My mito

> wasn't

> > identified with the fresh biopsy with immediate OXPHOS testing. I

> ended up

> > going to see Dr. Shoffner. Have you tried an MDA clinic? Not all

> are up on

> > mito, but some have gotten very good.

> >

> > Hugs,

> > laurie

> >

> > > From: " dawnanich "

> > > Reply-To:

> > > Date: Fri, 18 Feb 2005 18:30:30 -0000

> > > To:

> > > Subject: I am not sure what to think!!!!

> > >

> > >

> > >

> > > I was just informed by a Dr at Mayo that he does not htink I

have

> > > Mito. The neurologist up there does not think I have a

> neurological

> > > disease. Every neurologist I have seen has a different

> > > opinion...cervical stenosis, mylenopathy, degenerative

> neurological

> > > disoder, metabolic disorder, conversion disorder....Here are

all

> of

> > > my for sure diagnosis...

> > >

> > > Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

> > > gastroparesis and allergies

> > >

> > > I have CFS/FM type symptoms. My gait is abnormal and gets worse

> with

> > > exertion...myastania like. The more that I do the worse my

muscle

> > > control is and I become weak and tremor. I also become SOB and

> > > nautious. My muscle aches and pains have increased.

> > >

> > > I ahve been told that I have mitochondrial dysfunction which is

> > > probably secondary to another disease process..which noone has

> been

> > > able to figure out.

> > >

> > > My mito labs are all normal, but not done fasting or during a

> > > crisis. My frozen muscle biopsy shows mild myopathy, microfiber

> > > degeneration and some acummulation of mitochodria and lipids.

> > >

> > > WHat was interesting is all of my vitamins were very high

showing

> > > good nutrition however I have low Co Q 10, creatine and thiamin

> > > which all have to do with energy metablism.

> > >

> > > My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

> > > felt this is good. I have an autoimmune disease which is

causing

> my

> > > mitochodrial problem. But as I though about it more I am not

> > > convinced that the opposite is true. I still feel this could be

> mito

> > > with a secondary autoimmune disease. I have research autoimmune

> > > diseases and I do not fit any of the criteria. I haveno

evidence

> of

> > > muscle inflammation either!!!

> > >

> > > I look at family history and the health problem of my children

> and I

> > > am not convinced it is not mito. I wish I was.

> > >

> > > What do others think? Any input would be appreciated!!!!!

> > >

> > > Thank you,

> > >

> > > Dawn Anich

> > >

> > >

> > >

> > >

> > >

> > >

> > > 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]

Dawn

My lactate and pyruvate are in the normal limits, but the ratio is out of

whack and indicates mito. My alanine is also high. Other than some very low

organic acids, my labs were always normal.

laurie

>

> Reply-To:

> Date: Fri, 18 Feb 2005 20:08:36 -0000

> To:

> Subject: Re: I am not sure what to think!!!!

>

>

>

> I felt able to " bite the bullet " and go for a fresh muscle biopsy,

> and tacked it on to a family vacation because of the travel

> involved. It saved me a lot of time and trouble I believe - the

> results were definitive for me.

>

> I had many neuros tell me " nothing's wrong with you " , but the fresh

> muscle biopsy proved different.

>

> Do you have abnormal lactate/pyruvate blood tests? To me, that's the

> only other test that " proves " I have a mitochondrial disease - all

> other tests were normal. I have near normal CoQ10 and carnitine

> levels.

>

> Take care,

> RH

>

>

>

>>> Dawn

>>>

>>> It sounds like you are in the place I was after several frozen

>> biopsies. I

>>> guess I wouldn't rule out mito without having a fresh biopsy

> with

>> OXPHOS

>>> testing and the opinion of one of the mito specialsists. My mito

>> wasn't

>>> identified with the fresh biopsy with immediate OXPHOS testing. I

>> ended up

>>> going to see Dr. Shoffner. Have you tried an MDA clinic? Not all

>> are up on

>>> mito, but some have gotten very good.

>>>

>>> Hugs,

>>> laurie

>>>

>>>> From: " dawnanich "

>>>> Reply-To:

>>>> Date: Fri, 18 Feb 2005 18:30:30 -0000

>>>> To:

>>>> Subject: I am not sure what to think!!!!

>>>>

>>>>

>>>>

>>>> I was just informed by a Dr at Mayo that he does not htink I

> have

>>>> Mito. The neurologist up there does not think I have a

>> neurological

>>>> disease. Every neurologist I have seen has a different

>>>> opinion...cervical stenosis, mylenopathy, degenerative

>> neurological

>>>> disoder, metabolic disorder, conversion disorder....Here are

> all

>> of

>>>> my for sure diagnosis...

>>>>

>>>> Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

>>>> gastroparesis and allergies

>>>>

>>>> I have CFS/FM type symptoms. My gait is abnormal and gets worse

>> with

>>>> exertion...myastania like. The more that I do the worse my

> muscle

>>>> control is and I become weak and tremor. I also become SOB and

>>>> nautious. My muscle aches and pains have increased.

>>>>

>>>> I ahve been told that I have mitochondrial dysfunction which is

>>>> probably secondary to another disease process..which noone has

>> been

>>>> able to figure out.

>>>>

>>>> My mito labs are all normal, but not done fasting or during a

>>>> crisis. My frozen muscle biopsy shows mild myopathy, microfiber

>>>> degeneration and some acummulation of mitochodria and lipids.

>>>>

>>>> WHat was interesting is all of my vitamins were very high

> showing

>>>> good nutrition however I have low Co Q 10, creatine and thiamin

>>>> which all have to do with energy metablism.

>>>>

>>>> My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

>>>> felt this is good. I have an autoimmune disease which is

> causing

>> my

>>>> mitochodrial problem. But as I though about it more I am not

>>>> convinced that the opposite is true. I still feel this could be

>> mito

>>>> with a secondary autoimmune disease. I have research autoimmune

>>>> diseases and I do not fit any of the criteria. I haveno

> evidence

>> of

>>>> muscle inflammation either!!!

>>>>

>>>> I look at family history and the health problem of my children

>> and I

>>>> am not convinced it is not mito. I wish I was.

>>>>

>>>> What do others think? Any input would be appreciated!!!!!

>>>>

>>>> Thank you,

>>>>

>>>> Dawn Anich

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>> 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]

Dawn

My lactate and pyruvate are in the normal limits, but the ratio is out of

whack and indicates mito. My alanine is also high. Other than some very low

organic acids, my labs were always normal.

laurie

>

> Reply-To:

> Date: Fri, 18 Feb 2005 20:08:36 -0000

> To:

> Subject: Re: I am not sure what to think!!!!

>

>

>

> I felt able to " bite the bullet " and go for a fresh muscle biopsy,

> and tacked it on to a family vacation because of the travel

> involved. It saved me a lot of time and trouble I believe - the

> results were definitive for me.

>

> I had many neuros tell me " nothing's wrong with you " , but the fresh

> muscle biopsy proved different.

>

> Do you have abnormal lactate/pyruvate blood tests? To me, that's the

> only other test that " proves " I have a mitochondrial disease - all

> other tests were normal. I have near normal CoQ10 and carnitine

> levels.

>

> Take care,

> RH

>

>

>

>>> Dawn

>>>

>>> It sounds like you are in the place I was after several frozen

>> biopsies. I

>>> guess I wouldn't rule out mito without having a fresh biopsy

> with

>> OXPHOS

>>> testing and the opinion of one of the mito specialsists. My mito

>> wasn't

>>> identified with the fresh biopsy with immediate OXPHOS testing. I

>> ended up

>>> going to see Dr. Shoffner. Have you tried an MDA clinic? Not all

>> are up on

>>> mito, but some have gotten very good.

>>>

>>> Hugs,

>>> laurie

>>>

>>>> From: " dawnanich "

>>>> Reply-To:

>>>> Date: Fri, 18 Feb 2005 18:30:30 -0000

>>>> To:

>>>> Subject: I am not sure what to think!!!!

>>>>

>>>>

>>>>

>>>> I was just informed by a Dr at Mayo that he does not htink I

> have

>>>> Mito. The neurologist up there does not think I have a

>> neurological

>>>> disease. Every neurologist I have seen has a different

>>>> opinion...cervical stenosis, mylenopathy, degenerative

>> neurological

>>>> disoder, metabolic disorder, conversion disorder....Here are

> all

>> of

>>>> my for sure diagnosis...

>>>>

>>>> Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

>>>> gastroparesis and allergies

>>>>

>>>> I have CFS/FM type symptoms. My gait is abnormal and gets worse

>> with

>>>> exertion...myastania like. The more that I do the worse my

> muscle

>>>> control is and I become weak and tremor. I also become SOB and

>>>> nautious. My muscle aches and pains have increased.

>>>>

>>>> I ahve been told that I have mitochondrial dysfunction which is

>>>> probably secondary to another disease process..which noone has

>> been

>>>> able to figure out.

>>>>

>>>> My mito labs are all normal, but not done fasting or during a

>>>> crisis. My frozen muscle biopsy shows mild myopathy, microfiber

>>>> degeneration and some acummulation of mitochodria and lipids.

>>>>

>>>> WHat was interesting is all of my vitamins were very high

> showing

>>>> good nutrition however I have low Co Q 10, creatine and thiamin

>>>> which all have to do with energy metablism.

>>>>

>>>> My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

>>>> felt this is good. I have an autoimmune disease which is

> causing

>> my

>>>> mitochodrial problem. But as I though about it more I am not

>>>> convinced that the opposite is true. I still feel this could be

>> mito

>>>> with a secondary autoimmune disease. I have research autoimmune

>>>> diseases and I do not fit any of the criteria. I haveno

> evidence

>> of

>>>> muscle inflammation either!!!

>>>>

>>>> I look at family history and the health problem of my children

>> and I

>>>> am not convinced it is not mito. I wish I was.

>>>>

>>>> What do others think? Any input would be appreciated!!!!!

>>>>

>>>> Thank you,

>>>>

>>>> Dawn Anich

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>> 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]

Dawn

I went to an MDA neuro that is not in my local coverage area to find one who

was interested in pursuing answers for me. I also switched from a ped neuro

to an adult neuro at the same clinic which I will never regret.

laurie

>

> Reply-To:

> Date: Fri, 18 Feb 2005 19:55:38 -0000

> To:

> Subject: Re: I am not sure what to think!!!!

>

>

>

> ---Thanks for the reply Laurie! The MDA Dr is diagnosed me with a

> conversion reaction. I think a fresh biopsy is my next step. But

> maybe I should wait a while and see how my symptoms evolve and what

> else shows up. It seems that every six months somethig else comes up.

>

> I give you soo much credit for pursuing mito without the support and

> knowledge that we have these days. It is still very limited, but

> much better than when you were seeking a diagnosi. We all appreciate

> the knowleadge and perserverance of all of you mito pioneers.

>

> I am just not feeling very patient at the moment. I feel like I know

> less now and have more questions than I did before. I feel very

> frustrated.

>

> Dawn Anich

>

>

>

> In , Laureta Fitzgerald

> wrote:

>> Dawn

>>

>> It sounds like you are in the place I was after several frozen

> biopsies. I

>> guess I wouldn't rule out mito without having a fresh biopsy with

> OXPHOS

>> testing and the opinion of one of the mito specialsists. My mito

> wasn't

>> identified with the fresh biopsy with immediate OXPHOS testing. I

> ended up

>> going to see Dr. Shoffner. Have you tried an MDA clinic? Not all

> are up on

>> mito, but some have gotten very good.

>>

>> Hugs,

>> laurie

>>

>>> From: " dawnanich "

>>> Reply-To:

>>> Date: Fri, 18 Feb 2005 18:30:30 -0000

>>> To:

>>> Subject: I am not sure what to think!!!!

>>>

>>>

>>>

>>> I was just informed by a Dr at Mayo that he does not htink I have

>>> Mito. The neurologist up there does not think I have a

> neurological

>>> disease. Every neurologist I have seen has a different

>>> opinion...cervical stenosis, mylenopathy, degenerative

> neurological

>>> disoder, metabolic disorder, conversion disorder....Here are all

> of

>>> my for sure diagnosis...

>>>

>>> Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

>>> gastroparesis and allergies

>>>

>>> I have CFS/FM type symptoms. My gait is abnormal and gets worse

> with

>>> exertion...myastania like. The more that I do the worse my muscle

>>> control is and I become weak and tremor. I also become SOB and

>>> nautious. My muscle aches and pains have increased.

>>>

>>> I ahve been told that I have mitochondrial dysfunction which is

>>> probably secondary to another disease process..which noone has

> been

>>> able to figure out.

>>>

>>> My mito labs are all normal, but not done fasting or during a

>>> crisis. My frozen muscle biopsy shows mild myopathy, microfiber

>>> degeneration and some acummulation of mitochodria and lipids.

>>>

>>> WHat was interesting is all of my vitamins were very high showing

>>> good nutrition however I have low Co Q 10, creatine and thiamin

>>> which all have to do with energy metablism.

>>>

>>> My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

>>> felt this is good. I have an autoimmune disease which is causing

> my

>>> mitochodrial problem. But as I though about it more I am not

>>> convinced that the opposite is true. I still feel this could be

> mito

>>> with a secondary autoimmune disease. I have research autoimmune

>>> diseases and I do not fit any of the criteria. I haveno evidence

> of

>>> muscle inflammation either!!!

>>>

>>> I look at family history and the health problem of my children

> and I

>>> am not convinced it is not mito. I wish I was.

>>>

>>> What do others think? Any input would be appreciated!!!!!

>>>

>>> Thank you,

>>>

>>> Dawn Anich

>>>

>>>

>>>

>>>

>>>

>>>

>>> 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]

The first time it was tested, my lactate/pyruvate ratio was 120, and

I was told normal is not more than 10 - 20. The nurse at the MDA

clinic actually missed the ratio being abnormal, but the doctor

reviewed it after the nurse, and called me with the results. Since

then, I've had ratios between 60 and 120, and sometimes high lactate

as well, but often not.

Take care,

RH

> >>> Dawn

> >>>

> >>> It sounds like you are in the place I was after several frozen

> >> biopsies. I

> >>> guess I wouldn't rule out mito without having a fresh biopsy

> > with

> >> OXPHOS

> >>> testing and the opinion of one of the mito specialsists. My mito

> >> wasn't

> >>> identified with the fresh biopsy with immediate OXPHOS testing.

I

> >> ended up

> >>> going to see Dr. Shoffner. Have you tried an MDA clinic? Not all

> >> are up on

> >>> mito, but some have gotten very good.

> >>>

> >>> Hugs,

> >>> laurie

> >>>

> >>>> From: " dawnanich "

> >>>> Reply-To:

> >>>> Date: Fri, 18 Feb 2005 18:30:30 -0000

> >>>> To:

> >>>> Subject: I am not sure what to think!!!!

> >>>>

> >>>>

> >>>>

> >>>> I was just informed by a Dr at Mayo that he does not htink I

> > have

> >>>> Mito. The neurologist up there does not think I have a

> >> neurological

> >>>> disease. Every neurologist I have seen has a different

> >>>> opinion...cervical stenosis, mylenopathy, degenerative

> >> neurological

> >>>> disoder, metabolic disorder, conversion disorder....Here are

> > all

> >> of

> >>>> my for sure diagnosis...

> >>>>

> >>>> Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

> >>>> gastroparesis and allergies

> >>>>

> >>>> I have CFS/FM type symptoms. My gait is abnormal and gets worse

> >> with

> >>>> exertion...myastania like. The more that I do the worse my

> > muscle

> >>>> control is and I become weak and tremor. I also become SOB and

> >>>> nautious. My muscle aches and pains have increased.

> >>>>

> >>>> I ahve been told that I have mitochondrial dysfunction which is

> >>>> probably secondary to another disease process..which noone has

> >> been

> >>>> able to figure out.

> >>>>

> >>>> My mito labs are all normal, but not done fasting or during a

> >>>> crisis. My frozen muscle biopsy shows mild myopathy, microfiber

> >>>> degeneration and some acummulation of mitochodria and lipids.

> >>>>

> >>>> WHat was interesting is all of my vitamins were very high

> > showing

> >>>> good nutrition however I have low Co Q 10, creatine and thiamin

> >>>> which all have to do with energy metablism.

> >>>>

> >>>> My ANA is 5.4 and I will be going to a rheumatiod Dr. At first

I

> >>>> felt this is good. I have an autoimmune disease which is

> > causing

> >> my

> >>>> mitochodrial problem. But as I though about it more I am not

> >>>> convinced that the opposite is true. I still feel this could be

> >> mito

> >>>> with a secondary autoimmune disease. I have research autoimmune

> >>>> diseases and I do not fit any of the criteria. I haveno

> > evidence

> >> of

> >>>> muscle inflammation either!!!

> >>>>

> >>>> I look at family history and the health problem of my children

> >> and I

> >>>> am not convinced it is not mito. I wish I was.

> >>>>

> >>>> What do others think? Any input would be appreciated!!!!!

> >>>>

> >>>> Thank you,

> >>>>

> >>>> Dawn Anich

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

> >>>> 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]

Dawn, also like laurie my lactate and pyruvate are always normal but my

alanine is very high...the docs all told me no way did I have mito, my biopsy

proved otherwise... hang in there...

[Guest guest]

Dawn, also like laurie my lactate and pyruvate are always normal but my

alanine is very high...the docs all told me no way did I have mito, my biopsy

proved otherwise... hang in there...

[Guest guest]

Dawn and

Dr. Cohen and Dr. Shoffner said the high alanine and abnormal

lactate/pyruvate ratio were indicative of mito. I was the one who wanted to

know for certain and went the route of a muscle biopsy.

laurie

> From: MitomomX3@...

> Reply-To:

> Date: Sat, 19 Feb 2005 07:54:19 EST

> To:

> Subject: Re: I am not sure what to think!!!!

>

>

> Dawn, also like laurie my lactate and pyruvate are always normal but my

> alanine is very high...the docs all told me no way did I have mito, my biopsy

> proved otherwise... hang in there...

>

>

>

>

[Guest guest]

Dawn and

Dr. Cohen and Dr. Shoffner said the high alanine and abnormal

lactate/pyruvate ratio were indicative of mito. I was the one who wanted to

know for certain and went the route of a muscle biopsy.

laurie

> From: MitomomX3@...

> Reply-To:

> Date: Sat, 19 Feb 2005 07:54:19 EST

> To:

> Subject: Re: I am not sure what to think!!!!

>

>

> Dawn, also like laurie my lactate and pyruvate are always normal but my

> alanine is very high...the docs all told me no way did I have mito, my biopsy

> proved otherwise... hang in there...

>

>

>

>

[Guest guest]

Hi Dawn,

Not sure I can help but I do not have muscle inflamation either. The doctor who

diagnosed my sister and subsequently me and my son said something about the way

I walked up stairs and walked. I have very mild symptoms as does my son but we

have confirmed blood tests for MELAS. I mainly have muscle weakness and

diabetes with blood sugar that goes up with physical activity. My son mainly

has constipaton/stomach problems. My sister had severe muscle weakness and

seizures and a stroke. My mother had the seizures and weakness although she

died in 1988 and the official cause was epilepsy.

Anyway, I am not sure what your next step would be although I know that no

muscle inflamation does not rule out MELAS.

Janet Sample

(near Green Bay--the doc is Dr Tick in Mequon)

I am not sure what to think!!!!

I was just informed by a Dr at Mayo that he does not htink I have

Mito. The neurologist up there does not think I have a neurological

disease. Every neurologist I have seen has a different

opinion...cervical stenosis, mylenopathy, degenerative neurological

disoder, metabolic disorder, conversion disorder....Here are all of

my for sure diagnosis...

Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

gastroparesis and allergies

I have CFS/FM type symptoms. My gait is abnormal and gets worse with

exertion...myastania like. The more that I do the worse my muscle

control is and I become weak and tremor. I also become SOB and

nautious. My muscle aches and pains have increased.

I ahve been told that I have mitochondrial dysfunction which is

probably secondary to another disease process..which noone has been

able to figure out.

My mito labs are all normal, but not done fasting or during a

crisis. My frozen muscle biopsy shows mild myopathy, microfiber

degeneration and some acummulation of mitochodria and lipids.

WHat was interesting is all of my vitamins were very high showing

good nutrition however I have low Co Q 10, creatine and thiamin

which all have to do with energy metablism.

My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

felt this is good. I have an autoimmune disease which is causing my

mitochodrial problem. But as I though about it more I am not

convinced that the opposite is true. I still feel this could be mito

with a secondary autoimmune disease. I have research autoimmune

diseases and I do not fit any of the criteria. I haveno evidence of

muscle inflammation either!!!

I look at family history and the health problem of my children and I

am not convinced it is not mito. I wish I was.

What do others think? Any input would be appreciated!!!!!

Thank you,

Dawn Anich

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]

For me I also have abnormal lactate/pyruvate tests but my son's lactic acid

tests have been normal. He is 12 now but back in 2003 he went thru near as we

can figure a mini stroke where we could not wake him up and then when he woke up

he was talking like a 3 year old and could not remember his cats names, calling

them gloves instead of mittens and sooty instead of smoky and calling ketchup

red stuff.

This was about 8:30 in the morning. He then went back to sleep, woke up around

2:30 and we went to the school and at 4:00 he was doing math. When we went down

to Milwaukee two weeks later the doctor said it was probably a stroke brought on

by high lactic acid.

High lactic acid was the thing my sister's doctor first noticed when she was

admitted to the emergency room when she went into a coma in 1996.

Anyway, sorry I do not have any other suggestons.

Janet Sample

I am not sure what to think!!!!

> > >

> > >

> > >

> > > I was just informed by a Dr at Mayo that he does not htink I

have

> > > Mito. The neurologist up there does not think I have a

> neurological

> > > disease. Every neurologist I have seen has a different

> > > opinion...cervical stenosis, mylenopathy, degenerative

> neurological

> > > disoder, metabolic disorder, conversion disorder....Here are

all

> of

> > > my for sure diagnosis...

> > >

> > > Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

> > > gastroparesis and allergies

> > >

> > > I have CFS/FM type symptoms. My gait is abnormal and gets worse

> with

> > > exertion...myastania like. The more that I do the worse my

muscle

> > > control is and I become weak and tremor. I also become SOB and

> > > nautious. My muscle aches and pains have increased.

> > >

> > > I ahve been told that I have mitochondrial dysfunction which is

> > > probably secondary to another disease process..which noone has

> been

> > > able to figure out.

> > >

> > > My mito labs are all normal, but not done fasting or during a

> > > crisis. My frozen muscle biopsy shows mild myopathy, microfiber

> > > degeneration and some acummulation of mitochodria and lipids.

> > >

> > > WHat was interesting is all of my vitamins were very high

showing

> > > good nutrition however I have low Co Q 10, creatine and thiamin

> > > which all have to do with energy metablism.

> > >

> > > My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

> > > felt this is good. I have an autoimmune disease which is

causing

> my

> > > mitochodrial problem. But as I though about it more I am not

> > > convinced that the opposite is true. I still feel this could be

> mito

> > > with a secondary autoimmune disease. I have research autoimmune

> > > diseases and I do not fit any of the criteria. I haveno

evidence

> of

> > > muscle inflammation either!!!

> > >

> > > I look at family history and the health problem of my children

> and I

> > > am not convinced it is not mito. I wish I was.

> > >

> > > What do others think? Any input would be appreciated!!!!!

> > >

> > > Thank you,

> > >

> > > Dawn Anich

> > >

> > >

> > >

> > >

> > >

> > >

> > > 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]

Dawn, I am sorry that you are going through this again. Many of us here

can relate to you. I did have an abnormal biopsy, but all my labs are

constantly normal, which confuses a lot of the doctors, especially those

who still aren't sure that Mitochondrial Disorders are " real " . The

doctor who first diagnosed me went off of clinical symptoms and family

history. Please know that we are all here for you.

Smiles,

a

On Fri, 18 Feb 2005 18:30:30 -0000 " dawnanich " Danich1@...>

writes:

I was just informed by a Dr at Mayo that he does not htink I have

Mito. The neurologist up there does not think I have a neurological

disease. Every neurologist I have seen has a different

opinion...cervical stenosis, mylenopathy, degenerative neurological

disoder, metabolic disorder, conversion disorder....Here are all of

my for sure diagnosis...

Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

gastroparesis and allergies

I have CFS/FM type symptoms. My gait is abnormal and gets worse with

exertion...myastania like. The more that I do the worse my muscle

control is and I become weak and tremor. I also become SOB and

nautious. My muscle aches and pains have increased.

I ahve been told that I have mitochondrial dysfunction which is

probably secondary to another disease process..which noone has been

able to figure out.

My mito labs are all normal, but not done fasting or during a

crisis. My frozen muscle biopsy shows mild myopathy, microfiber

degeneration and some acummulation of mitochodria and lipids.

WHat was interesting is all of my vitamins were very high showing

good nutrition however I have low Co Q 10, creatine and thiamin

which all have to do with energy metablism.

My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

felt this is good. I have an autoimmune disease which is causing my

mitochodrial problem. But as I though about it more I am not

convinced that the opposite is true. I still feel this could be mito

with a secondary autoimmune disease. I have research autoimmune

diseases and I do not fit any of the criteria. I haveno evidence of

muscle inflammation either!!!

I look at family history and the health problem of my children and I

am not convinced it is not mito. I wish I was.

What do others think? Any input would be appreciated!!!!!

Thank you,

Dawn Anich

[Guest guest]

--Hi Janet, thanks for the reply. I guess all I can do right now is

wait and see how things progress. My next step would be a fresh

muscle biopsy.

Dawn

- In , " Janet Sample "

wrote:

> Hi Dawn,

>

> Not sure I can help but I do not have muscle inflamation either.

The doctor who diagnosed my sister and subsequently me and my son

said something about the way I walked up stairs and walked. I have

very mild symptoms as does my son but we have confirmed blood tests

for MELAS. I mainly have muscle weakness and diabetes with blood

sugar that goes up with physical activity. My son mainly has

constipaton/stomach problems. My sister had severe muscle weakness

and seizures and a stroke. My mother had the seizures and weakness

although she died in 1988 and the official cause was epilepsy.

>

> Anyway, I am not sure what your next step would be although I know

that no muscle inflamation does not rule out MELAS.

>

> Janet Sample

> (near Green Bay--the doc is Dr Tick in Mequon)

>

> I am not sure what to think!!!!

>

>

>

> I was just informed by a Dr at Mayo that he does not htink I

have

> Mito. The neurologist up there does not think I have a

neurological

> disease. Every neurologist I have seen has a different

> opinion...cervical stenosis, mylenopathy, degenerative

neurological

> disoder, metabolic disorder, conversion disorder....Here are all

of

> my for sure diagnosis...

>

> Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

> gastroparesis and allergies

>

> I have CFS/FM type symptoms. My gait is abnormal and gets worse

with

> exertion...myastania like. The more that I do the worse my

muscle

> control is and I become weak and tremor. I also become SOB and

> nautious. My muscle aches and pains have increased.

>

> I ahve been told that I have mitochondrial dysfunction which is

> probably secondary to another disease process..which noone has

been

> able to figure out.

>

> My mito labs are all normal, but not done fasting or during a

> crisis. My frozen muscle biopsy shows mild myopathy, microfiber

> degeneration and some acummulation of mitochodria and lipids.

>

> WHat was interesting is all of my vitamins were very high

showing

> good nutrition however I have low Co Q 10, creatine and thiamin

> which all have to do with energy metablism.

>

> My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

> felt this is good. I have an autoimmune disease which is causing

my

> mitochodrial problem. But as I though about it more I am not

> convinced that the opposite is true. I still feel this could be

mito

> with a secondary autoimmune disease. I have research autoimmune

> diseases and I do not fit any of the criteria. I haveno evidence

of

> muscle inflammation either!!!

>

> I look at family history and the health problem of my children

and I

> am not convinced it is not mito. I wish I was.

>

> What do others think? Any input would be appreciated!!!!!

>

> Thank you,

>

> Dawn Anich

>

>

>

>

>

> 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]

--a, Thank you for your reply. You and others here have

confirmed that you can have mito without abnormal labs. I guess I

will have to go for the fresh biopsy some time. I am definitely not

convinced that this is not mito. Thanks for your words of

encouragement.

Dawn

In , a C Koch wrote:

> Dawn, I am sorry that you are going through this again. Many of

us here

> can relate to you. I did have an abnormal biopsy, but all my labs

are

> constantly normal, which confuses a lot of the doctors, especially

those

> who still aren't sure that Mitochondrial Disorders are " real " . The

> doctor who first diagnosed me went off of clinical symptoms and

family

> history. Please know that we are all here for you.

>

> Smiles,

> a

>

> On Fri, 18 Feb 2005 18:30:30 -0000 " dawnanich "

> writes:

>

> I was just informed by a Dr at Mayo that he does not htink I have

> Mito. The neurologist up there does not think I have a

neurological

> disease. Every neurologist I have seen has a different

> opinion...cervical stenosis, mylenopathy, degenerative

neurological

> disoder, metabolic disorder, conversion disorder....Here are all

of

> my for sure diagnosis...

>

> Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

> gastroparesis and allergies

>

> I have CFS/FM type symptoms. My gait is abnormal and gets worse

with

> exertion...myastania like. The more that I do the worse my muscle

> control is and I become weak and tremor. I also become SOB and

> nautious. My muscle aches and pains have increased.

>

> I ahve been told that I have mitochondrial dysfunction which is

> probably secondary to another disease process..which noone has

been

> able to figure out.

>

> My mito labs are all normal, but not done fasting or during a

> crisis. My frozen muscle biopsy shows mild myopathy, microfiber

> degeneration and some acummulation of mitochodria and lipids.

>

> WHat was interesting is all of my vitamins were very high showing

> good nutrition however I have low Co Q 10, creatine and thiamin

> which all have to do with energy metablism.

>

> My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

> felt this is good. I have an autoimmune disease which is causing

my

> mitochodrial problem. But as I though about it more I am not

> convinced that the opposite is true. I still feel this could be

mito

> with a secondary autoimmune disease. I have research autoimmune

> diseases and I do not fit any of the criteria. I haveno evidence

of

> muscle inflammation either!!!

>

> I look at family history and the health problem of my children and

I

> am not convinced it is not mito. I wish I was.

>

> What do others think? Any input would be appreciated!!!!!

>

> Thank you,

>

> Dawn Anich

>

>

[Guest guest]

Remember that most, if not all, labs that do fresh muscle biopsies

are doing comparative testing to look for other conditions as well.

Dr. Shoffner in Atlanta went over a bunch of other conditions they

tested my muscle biopsy for, and certainly if they see signs of

another condition, they'd look in that direction.

In other words, a fresh muscle biopsy would be done to test for mito,

but also would test for a host of other conditions that might not

be " on the radar " yet. For me, they found dead muscle and

regenerating muscle, similar to that seen in fetuses but definitely

not adults, indicating something else is going on too.

Take care,

RH

> > Dawn, I am sorry that you are going through this again. Many of

> us here

> > can relate to you. I did have an abnormal biopsy, but all my

labs

> are

> > constantly normal, which confuses a lot of the doctors,

especially

> those

> > who still aren't sure that Mitochondrial Disorders are " real " .

The

> > doctor who first diagnosed me went off of clinical symptoms and

> family

> > history. Please know that we are all here for you.

> >

> > Smiles,

> > a

> >

> > On Fri, 18 Feb 2005 18:30:30 -0000 " dawnanich "

> > writes:

> >

> > I was just informed by a Dr at Mayo that he does not htink I have

> > Mito. The neurologist up there does not think I have a

> neurological

> > disease. Every neurologist I have seen has a different

> > opinion...cervical stenosis, mylenopathy, degenerative

> neurological

> > disoder, metabolic disorder, conversion disorder....Here are all

> of

> > my for sure diagnosis...

> >

> > Autonomic neuropathy, POTS, GERD, mild myopathy, asthma,

> > gastroparesis and allergies

> >

> > I have CFS/FM type symptoms. My gait is abnormal and gets worse

> with

> > exertion...myastania like. The more that I do the worse my muscle

> > control is and I become weak and tremor. I also become SOB and

> > nautious. My muscle aches and pains have increased.

> >

> > I ahve been told that I have mitochondrial dysfunction which is

> > probably secondary to another disease process..which noone has

> been

> > able to figure out.

> >

> > My mito labs are all normal, but not done fasting or during a

> > crisis. My frozen muscle biopsy shows mild myopathy, microfiber

> > degeneration and some acummulation of mitochodria and lipids.

> >

> > WHat was interesting is all of my vitamins were very high showing

> > good nutrition however I have low Co Q 10, creatine and thiamin

> > which all have to do with energy metablism.

> >

> > My ANA is 5.4 and I will be going to a rheumatiod Dr. At first I

> > felt this is good. I have an autoimmune disease which is causing

> my

> > mitochodrial problem. But as I though about it more I am not

> > convinced that the opposite is true. I still feel this could be

> mito

> > with a secondary autoimmune disease. I have research autoimmune

> > diseases and I do not fit any of the criteria. I haveno evidence

> of

> > muscle inflammation either!!!

> >

> > I look at family history and the health problem of my children

and

> I

> > am not convinced it is not mito. I wish I was.

> >

> > What do others think? Any input would be appreciated!!!!!

> >

> > Thank you,

> >

> > Dawn Anich

> >

> >