New Member - Sorry, Long Post

[Guest guest]

I've just signed on with the group and I'm an undiagnosed 44-year-old

male that until about 1-½ years ago was in good health other than

being a bit overweight with high blood pressure. I had been keeping

in pretty good shape with a regular exercise program of running and

weight training to keep in form for my swing dance hobby.

My first sign of trouble was minor numbness/tingling of the left

hand. Over time the sensory sensations started to spread to both

hands and arms as well as my face and legs. Doctors initially

suspected MS and I've been through multiple MRI's, nerve conduction

and evoked potentials test which have all been negative.

My 1st neurologist was suggesting counseling since he could find

nothing wrong until one day a random blood test showed a CK reading

of 2,600. I was put on prednisone therapy (which had no effect) and

referred to a rheumatologist.

Blood tests for every imaginable malady were conducted and Lupus,

Myositus, Lyme disease as well as some obscure tropical diseases

given my frequent travel to South America were all ruled out. The

reumatologist felt I might have a metabolic condition and referred me

back to my neurologist who pretty much gave up trying to figure out

the problem.

I went to another neurologist for a second opinion. Initially he

suspected MS that had somehow been missed and he ran a whole suite of

tests and came up negative for everything. He was concerned by the

continued progression of symptoms and advised me to seek advanced

diagnostic testing at UCLA.

UCLA ran repeat tests for nerve conduction, evoked potentials as well

as every blood test that has ever been conceived. Everything came

back normal. I was then sent off for neurophysiolgy testing and

finally got some abnormal readings when 5 minutes into the stress

test, my CK level shot up from a pretest level of 90 to over 550. My

ammonia levels also went from 30 to 111, which the doctor said was to

high.

My next step is a muscle biopsy but the doctors are perplexed by my

extensive peripheral nerve symptoms. CIDP was mentioned as a

possibility but the lack of evidence from all the neurological tests

seems to have them leaning to some sort of a metabolic/mitochondral

condition.

My primary symptoms are detailed as follows:

Peripheral numbness/tingling of the face, hands, arms and feet

(bilateral). These sensations continue to worsen but still remain

mostly a nuisance of being a strange feeling. Not painful or

limiting dexterity.

Abdominal sensations – usually a benign odd feeling but they have

intensified to where some discomfort occurs on occasion. Bowel

irregularity is also occurring periodically - usually diarrhea but it

occasionally feels like my system is blocking up/slowing down.

Fatigue – always somewhat tired and best described as just

not " feeling good " . I'm not so bad that I'm missing work but I

definitely notice a difference in how I feel.

Leg spasms/cramps when exercising

Drooping/odd feeling in my right eye. It sort of feels like a

tingling feeling and the eyelid feels like it's droopy/hard to keep

open. Worsens if I look up without moving my head. This comes on

quickly and it lasts for up to a couple of hours at most and then

fades away. Again, no apparent trigger to when this occurs.

Muscle twitching – mostly with the legs and arms and occasionally on

my back. Yesterday I had my neck twitching for the first time. This

usually only seems to happen when I'm sitting still or lying down.

You can actually see the muscle moving. This is not painful and it

generally stops as soon as I start moving.

Weakness starting to worsen – particularly in right leg. Tend to

stumble and have a bit of a limp when walking.

I've been trying to ignore things as best I can and keep active but

whatever is going on only continues to progress. The doctors seem

perplexed by the mixed symptoms and I'm finding that I can't maintain

anywhere near my past level of activity.

I'm curious to see whether this smorgasbord of symptoms is consistent

with a mito problem. Hopefully the muscle biopsy will provide some

direction. Until then, I remain in diagnostic no mans land.

Bob

[Guest guest]

Bob,

Welcome to the site. I am rather new here myself. There are many

concerned and knowledgeable people here. I hope you will get some

helpful information.

I am sorry you are having such a hard time getting a diagnosis and

treatment. Wow. You have been through a lot. I just have a few

thoughts for you, and they are not earth-shaking. I am sure others

will add their information.

First, I do not have neurological symptoms such as you describe. My

main problem is extreme muscle weakness, (eveything bilateral) crushing

fatigue that comes and goes, and mental sluggishness at times. Minor

neurological shooting pains sometimes, but those are manageable. I am

not sure at all about how it matches others' mito symptoms. We are all

so different.

Get some info about the muscle biopsy. I am not an authority, but I

know if it is not done correctly, the likelihood of getting useful

information is reduced.

It sounds like you have had an extensive workup. My thought is, keep

persisting. Have they checked in the area of toxic exposure at all?

It is not popular thing to check for, in my experience. Also, your

trips to South America. Seems like there could be some exotic thing

they are missing about that. Thoroughly check side effects of meds you

are on. Did anything change in your life when the symptoms started?

(physically, I mean...different house, job, etc, where you might be

exposed to toxic chemicals, or pesticides, or mold, for example) Mito

damage due to toxins and drugs is not played up in the mito

literature, but it does exist. Keep digging.

You probably have checked the MDA and UMDF sites. They have a ton of

useful information.

I wish i could be more helpful. Stay tuned into this site. I have

found the most useful information and good references here. And very

caring people.

Regards

Sunny

>

>

> I've just signed on with the group and I'm an undiagnosed 44-year-old

> male that until about 1-½ years ago was in good health other than

> being a bit overweight with high blood pressure.  I had been keeping

> in pretty good shape with a regular exercise program of running and

> weight training to keep in form for my swing dance hobby.

>

> My first sign of trouble was minor numbness/tingling of the left

> hand.  Over time the sensory sensations started to spread to both

> hands and arms as well as my face and legs.  Doctors initially

> suspected MS and I've been through multiple MRI's, nerve conduction

> and evoked potentials test which have all been negative.

>

> My 1st neurologist was suggesting counseling since he could find

> nothing wrong until one day a random blood test showed a CK reading

> of 2,600.  I was put on prednisone therapy (which had no effect) and

> referred to a rheumatologist.

>

> Blood tests for every imaginable malady were conducted and Lupus,

> Myositus, Lyme disease as well as some obscure tropical diseases

> given my frequent travel to South America were all ruled out.  The

> reumatologist felt I might have a metabolic condition and referred me

> back to my neurologist who pretty much gave up trying to figure out

> the problem.

>

> I went to another neurologist for a second opinion.  Initially he

> suspected MS that had somehow been missed and he ran a whole suite of

> tests and came up negative for everything.  He was concerned by the

> continued progression of symptoms and advised me to seek advanced

> diagnostic testing at UCLA.

>

> UCLA ran repeat tests for nerve conduction, evoked potentials as well

> as every blood test that has ever been conceived.  Everything came

> back normal.  I was then sent off for neurophysiolgy testing and

> finally got some abnormal readings when 5 minutes into the stress

> test, my CK level shot up from a pretest level of 90 to over 550.  My

> ammonia levels also went from 30 to 111, which the doctor said was to

> high.

>

> My next step is a muscle biopsy but the doctors are perplexed by my

> extensive peripheral nerve symptoms.  CIDP was mentioned as a

> possibility but the lack of evidence from all the neurological tests

> seems to have them leaning to some sort of a metabolic/mitochondral

> condition.

>

> My primary symptoms are detailed as follows:

>

> Peripheral numbness/tingling of the face, hands, arms and feet

> (bilateral).  These sensations continue to worsen but still remain

> mostly a nuisance of being a strange feeling.  Not painful or

> limiting dexterity.

>

> Abdominal sensations – usually a benign odd feeling but they have

> intensified to where some discomfort occurs on occasion.  Bowel

> irregularity is also occurring periodically - usually diarrhea but it

> occasionally feels like my system is blocking up/slowing down.

>

> Fatigue – always somewhat tired and best described as just

> not " feeling good " .  I'm not so bad that I'm missing work but I

> definitely notice a difference in how I feel.

>

> Leg spasms/cramps when exercising

>

> Drooping/odd feeling in my right eye.  It sort of feels like a

> tingling feeling and the eyelid feels like it's droopy/hard to keep

> open.  Worsens if I look up without moving my head.  This comes on

> quickly and it lasts for up to a couple of hours at most and then

> fades away.  Again, no apparent trigger to when this occurs.

>

> Muscle twitching – mostly with the legs and arms and occasionally on

> my back.  Yesterday I had my neck twitching for the first time.  This

> usually only seems to happen when I'm sitting still or lying down. 

> You can actually see the muscle moving.  This is not painful and it

> generally stops as soon as I start moving.

>

> Weakness starting to worsen – particularly in right leg.  Tend to

> stumble and have a bit of a limp when walking.

>

> I've been trying to ignore things as best I can and keep active but

> whatever is going on only continues to progress.  The doctors seem

> perplexed by the mixed symptoms and I'm finding that I can't maintain

> anywhere near my past level of activity.

>

> I'm curious to see whether this smorgasbord of symptoms is consistent

> with a mito problem.  Hopefully the muscle biopsy will provide some

> direction.  Until then, I remain in diagnostic no mans land.

>

> Bob

>

>

>

>

>

>

>

>

>

>

>

> 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]

Bob,

I do not know alot about mito but my sister was diagnossed in 1996, my mother

probably had it, and myself was diagnosed in 1997 and my son in 2003. We all

have MELAS--Mitochondrial Encephalytis, Lactic Acid, Stroke or Seizure like

events.

My sister had muscle weakness and seizures.

First of all--my son and I have mild symptoms all though his constipation is bad

when not taking Qgel.

I can definitely tell the difference when not taking Qgel (Co Q10) and Carnitor.

My son has minor dismotibility that gets very, very bad requiring a hospital

visit if he does not take the Carniqgel for a few days. He is 11 and 105 lbs

now.

My main problem is the tingling in the arms and feet. The top of my left foot

would always feel like my shoe was tied too tight--even with nothing on. I also

get little jerks like you describe or a dull sudden painlike sensation in my

legs and feet even when sitting at my desk at work. I also have diabetes that

my blood sugar goes up when I exercise--the opposite of normal diabetics.

The minor numbness/tingling you describe may also be caused by high blood sugar.

In my case the mito doc who diagnosed me said you will really never know if the

symptoms are from MELAS or Diabetes.

I also get tired very easily and have nerve damage to my eyes and slight hearing

loss.

I do not get the drooping eye but I believe others on the list have mentioned

that.

I do know that with mito there are over 40 " varieties " that are known and many

that are unknown and a muscle biopsy may or may not tell the answer. Our

diagnoses were made with blood testing. The doctor had a pretty good idea what

he was looking for and the tests came back positive.

If I were you I would look more into the mito. There is no real cure other than

megadoses of vitamins on the " vitamin cocktail " but at least you will have

relief from some syptoms--mainly fatique and maybe dismotbility. I know one

person once mentioned that she did not feel better until she got the CoQ10 or

Qgel dosage very high and balanced with the Carnitor so it may take some

experimenting so you need to consult a doctor. When I talked to the doc in

Milwaukee to get a prescription for the Qgel to fight the insurance company I

had told him I upped the CoQ10 from his original prescription in 1999 because I

had gained 30 lbs and that Dr Cohen at Cleveland Clinic's recommended list said

5-10 times your body weight in kilos. He said that it is not based on body

weight, the standard adult dosage is 125 mg twice a day. I know some people

on the list take like over 500 mg and some I think over 1000 mg per day so you

will want to consult your doctor. Myself, for my son and me I am sticking with

180 mg or three 30 mg Qgel because the recommended dosage for me at 150 lbs

would be like 340 mg at 5 times my body weight. That is what is published and

many other " mito experts " are saying. My doc knows alot about it but is not one

of the " experts " in the country.

You do not need a prescription for the CoQ10. Qgel is a brand name that is

supposed to be faster asborbed than others and has orphan drug status but not

marketing approval for the insurance companies to pay for it. My did for a

while and now changed administrators and I am fighting again. Carnitor is a

prescription form of l-carnitine that is regulated. Some companies such as

epic4health and I think Swanson Vitamins sell carnitine capsules and there is

carnitine in Carniqgel. And there are many l-carnitine products at the health

food stores. Be sure to get l-carnitine, there is another form I forget what

but there is a warning on like web md or something about it actually depleteing

carnitine in the body.

Before I forget--one of the biggest things that Dr Tick said was get your lactic

acid/pyruvic acid checked. the ratio can be a big indicator of how the disease

is progressing. When my sister went into a coma in 1996 (did it in 1994 for 4

days also), one of the things that was noted that her lactic acid level was sky

high. I had testing done in 1997 to determine my lactic acid level. While mine

was high in both a spinal tap and blood draw it was no where near as high as

hers. In 1996 she was given an experimental medicine called DCA which she

responded to that lowers lactic acid. It is still available today but not

widely prescribed as it also has side effects. When my son had a small stroke

last November where he was talking like a baby and could not remember how to

play his gameboy, or his cats names Dr Tick suggested if that kept happening we

may want to consider it and called out to the maker in Oregon to get pricing.

He has a patient in Milwaukee on it.

Anyway, my lactic acid is always high. Different labs use different measuring

scales but one of my latest results was the lactic acid was 56, the normal range

high was like 19.

Just some things to think about--I do not know very much compared to many others

on this list that can tell you much, much more. I am sure a lot more of them

will be responding--they may be away or just in a " crash " --that is when you are

very tired and do not feel like doing anything--cannot even drag yourself out of

bed. Not a technical term but one invented by people with mito.

Janet Sample

New Member - Sorry, Long Post

I've just signed on with the group and I'm an undiagnosed 44-year-old

male that until about 1-½ years ago was in good health other than

being a bit overweight with high blood pressure. I had been keeping

in pretty good shape with a regular exercise program of running and

weight training to keep in form for my swing dance hobby.

My first sign of trouble was minor numbness/tingling of the left

hand. Over time the sensory sensations started to spread to both

hands and arms as well as my face and legs. Doctors initially

suspected MS and I've been through multiple MRI's, nerve conduction

and evoked potentials test which have all been negative.

My 1st neurologist was suggesting counseling since he could find

nothing wrong until one day a random blood test showed a CK reading

of 2,600. I was put on prednisone therapy (which had no effect) and

referred to a rheumatologist.

Blood tests for every imaginable malady were conducted and Lupus,

Myositus, Lyme disease as well as some obscure tropical diseases

given my frequent travel to South America were all ruled out. The

reumatologist felt I might have a metabolic condition and referred me

back to my neurologist who pretty much gave up trying to figure out

the problem.

I went to another neurologist for a second opinion. Initially he

suspected MS that had somehow been missed and he ran a whole suite of

tests and came up negative for everything. He was concerned by the

continued progression of symptoms and advised me to seek advanced

diagnostic testing at UCLA.

UCLA ran repeat tests for nerve conduction, evoked potentials as well

as every blood test that has ever been conceived. Everything came

back normal. I was then sent off for neurophysiolgy testing and

finally got some abnormal readings when 5 minutes into the stress

test, my CK level shot up from a pretest level of 90 to over 550. My

ammonia levels also went from 30 to 111, which the doctor said was to

high.

My next step is a muscle biopsy but the doctors are perplexed by my

extensive peripheral nerve symptoms. CIDP was mentioned as a

possibility but the lack of evidence from all the neurological tests

seems to have them leaning to some sort of a metabolic/mitochondral

condition.

My primary symptoms are detailed as follows:

Peripheral numbness/tingling of the face, hands, arms and feet

(bilateral). These sensations continue to worsen but still remain

mostly a nuisance of being a strange feeling. Not painful or

limiting dexterity.

Abdominal sensations - usually a benign odd feeling but they have

intensified to where some discomfort occurs on occasion. Bowel

irregularity is also occurring periodically - usually diarrhea but it

occasionally feels like my system is blocking up/slowing down.

Fatigue - always somewhat tired and best described as just

not " feeling good " . I'm not so bad that I'm missing work but I

definitely notice a difference in how I feel.

Leg spasms/cramps when exercising

Drooping/odd feeling in my right eye. It sort of feels like a

tingling feeling and the eyelid feels like it's droopy/hard to keep

open. Worsens if I look up without moving my head. This comes on

quickly and it lasts for up to a couple of hours at most and then

fades away. Again, no apparent trigger to when this occurs.

Muscle twitching - mostly with the legs and arms and occasionally on

my back. Yesterday I had my neck twitching for the first time. This

usually only seems to happen when I'm sitting still or lying down.

You can actually see the muscle moving. This is not painful and it

generally stops as soon as I start moving.

Weakness starting to worsen - particularly in right leg. Tend to

stumble and have a bit of a limp when walking.

I've been trying to ignore things as best I can and keep active but

whatever is going on only continues to progress. The doctors seem

perplexed by the mixed symptoms and I'm finding that I can't maintain

anywhere near my past level of activity.

I'm curious to see whether this smorgasbord of symptoms is consistent

with a mito problem. Hopefully the muscle biopsy will provide some

direction. Until then, I remain in diagnostic no mans land.

Bob

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]

Bob,

I do not know alot about mito but my sister was diagnossed in 1996, my mother

probably had it, and myself was diagnosed in 1997 and my son in 2003. We all

have MELAS--Mitochondrial Encephalytis, Lactic Acid, Stroke or Seizure like

events.

My sister had muscle weakness and seizures.

First of all--my son and I have mild symptoms all though his constipation is bad

when not taking Qgel.

I can definitely tell the difference when not taking Qgel (Co Q10) and Carnitor.

My son has minor dismotibility that gets very, very bad requiring a hospital

visit if he does not take the Carniqgel for a few days. He is 11 and 105 lbs

now.

My main problem is the tingling in the arms and feet. The top of my left foot

would always feel like my shoe was tied too tight--even with nothing on. I also

get little jerks like you describe or a dull sudden painlike sensation in my

legs and feet even when sitting at my desk at work. I also have diabetes that

my blood sugar goes up when I exercise--the opposite of normal diabetics.

The minor numbness/tingling you describe may also be caused by high blood sugar.

In my case the mito doc who diagnosed me said you will really never know if the

symptoms are from MELAS or Diabetes.

I also get tired very easily and have nerve damage to my eyes and slight hearing

loss.

I do not get the drooping eye but I believe others on the list have mentioned

that.

I do know that with mito there are over 40 " varieties " that are known and many

that are unknown and a muscle biopsy may or may not tell the answer. Our

diagnoses were made with blood testing. The doctor had a pretty good idea what

he was looking for and the tests came back positive.

If I were you I would look more into the mito. There is no real cure other than

megadoses of vitamins on the " vitamin cocktail " but at least you will have

relief from some syptoms--mainly fatique and maybe dismotbility. I know one

person once mentioned that she did not feel better until she got the CoQ10 or

Qgel dosage very high and balanced with the Carnitor so it may take some

experimenting so you need to consult a doctor. When I talked to the doc in

Milwaukee to get a prescription for the Qgel to fight the insurance company I

had told him I upped the CoQ10 from his original prescription in 1999 because I

had gained 30 lbs and that Dr Cohen at Cleveland Clinic's recommended list said

5-10 times your body weight in kilos. He said that it is not based on body

weight, the standard adult dosage is 125 mg twice a day. I know some people

on the list take like over 500 mg and some I think over 1000 mg per day so you

will want to consult your doctor. Myself, for my son and me I am sticking with

180 mg or three 30 mg Qgel because the recommended dosage for me at 150 lbs

would be like 340 mg at 5 times my body weight. That is what is published and

many other " mito experts " are saying. My doc knows alot about it but is not one

of the " experts " in the country.

You do not need a prescription for the CoQ10. Qgel is a brand name that is

supposed to be faster asborbed than others and has orphan drug status but not

marketing approval for the insurance companies to pay for it. My did for a

while and now changed administrators and I am fighting again. Carnitor is a

prescription form of l-carnitine that is regulated. Some companies such as

epic4health and I think Swanson Vitamins sell carnitine capsules and there is

carnitine in Carniqgel. And there are many l-carnitine products at the health

food stores. Be sure to get l-carnitine, there is another form I forget what

but there is a warning on like web md or something about it actually depleteing

carnitine in the body.

Before I forget--one of the biggest things that Dr Tick said was get your lactic

acid/pyruvic acid checked. the ratio can be a big indicator of how the disease

is progressing. When my sister went into a coma in 1996 (did it in 1994 for 4

days also), one of the things that was noted that her lactic acid level was sky

high. I had testing done in 1997 to determine my lactic acid level. While mine

was high in both a spinal tap and blood draw it was no where near as high as

hers. In 1996 she was given an experimental medicine called DCA which she

responded to that lowers lactic acid. It is still available today but not

widely prescribed as it also has side effects. When my son had a small stroke

last November where he was talking like a baby and could not remember how to

play his gameboy, or his cats names Dr Tick suggested if that kept happening we

may want to consider it and called out to the maker in Oregon to get pricing.

He has a patient in Milwaukee on it.

Anyway, my lactic acid is always high. Different labs use different measuring

scales but one of my latest results was the lactic acid was 56, the normal range

high was like 19.

Just some things to think about--I do not know very much compared to many others

on this list that can tell you much, much more. I am sure a lot more of them

will be responding--they may be away or just in a " crash " --that is when you are

very tired and do not feel like doing anything--cannot even drag yourself out of

bed. Not a technical term but one invented by people with mito.

Janet Sample

New Member - Sorry, Long Post

I've just signed on with the group and I'm an undiagnosed 44-year-old

male that until about 1-½ years ago was in good health other than

being a bit overweight with high blood pressure. I had been keeping

in pretty good shape with a regular exercise program of running and

weight training to keep in form for my swing dance hobby.

My first sign of trouble was minor numbness/tingling of the left

hand. Over time the sensory sensations started to spread to both

hands and arms as well as my face and legs. Doctors initially

suspected MS and I've been through multiple MRI's, nerve conduction

and evoked potentials test which have all been negative.

My 1st neurologist was suggesting counseling since he could find

nothing wrong until one day a random blood test showed a CK reading

of 2,600. I was put on prednisone therapy (which had no effect) and

referred to a rheumatologist.

Blood tests for every imaginable malady were conducted and Lupus,

Myositus, Lyme disease as well as some obscure tropical diseases

given my frequent travel to South America were all ruled out. The

reumatologist felt I might have a metabolic condition and referred me

back to my neurologist who pretty much gave up trying to figure out

the problem.

I went to another neurologist for a second opinion. Initially he

suspected MS that had somehow been missed and he ran a whole suite of

tests and came up negative for everything. He was concerned by the

continued progression of symptoms and advised me to seek advanced

diagnostic testing at UCLA.

UCLA ran repeat tests for nerve conduction, evoked potentials as well

as every blood test that has ever been conceived. Everything came

back normal. I was then sent off for neurophysiolgy testing and

finally got some abnormal readings when 5 minutes into the stress

test, my CK level shot up from a pretest level of 90 to over 550. My

ammonia levels also went from 30 to 111, which the doctor said was to

high.

My next step is a muscle biopsy but the doctors are perplexed by my

extensive peripheral nerve symptoms. CIDP was mentioned as a

possibility but the lack of evidence from all the neurological tests

seems to have them leaning to some sort of a metabolic/mitochondral

condition.

My primary symptoms are detailed as follows:

Peripheral numbness/tingling of the face, hands, arms and feet

(bilateral). These sensations continue to worsen but still remain

mostly a nuisance of being a strange feeling. Not painful or

limiting dexterity.

Abdominal sensations - usually a benign odd feeling but they have

intensified to where some discomfort occurs on occasion. Bowel

irregularity is also occurring periodically - usually diarrhea but it

occasionally feels like my system is blocking up/slowing down.

Fatigue - always somewhat tired and best described as just

not " feeling good " . I'm not so bad that I'm missing work but I

definitely notice a difference in how I feel.

Leg spasms/cramps when exercising

Drooping/odd feeling in my right eye. It sort of feels like a

tingling feeling and the eyelid feels like it's droopy/hard to keep

open. Worsens if I look up without moving my head. This comes on

quickly and it lasts for up to a couple of hours at most and then

fades away. Again, no apparent trigger to when this occurs.

Muscle twitching - mostly with the legs and arms and occasionally on

my back. Yesterday I had my neck twitching for the first time. This

usually only seems to happen when I'm sitting still or lying down.

You can actually see the muscle moving. This is not painful and it

generally stops as soon as I start moving.

Weakness starting to worsen - particularly in right leg. Tend to

stumble and have a bit of a limp when walking.

I've been trying to ignore things as best I can and keep active but

whatever is going on only continues to progress. The doctors seem

perplexed by the mixed symptoms and I'm finding that I can't maintain

anywhere near my past level of activity.

I'm curious to see whether this smorgasbord of symptoms is consistent

with a mito problem. Hopefully the muscle biopsy will provide some

direction. Until then, I remain in diagnostic no mans land.

Bob

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.