Re: EMG results : - ( and venting too

August 5, 2003

> I had my emg today in new york city and of course it was neg. Of

> course I went to the bathroom and cried briefly. I went our to

> dinner with my daughter who lives in the city and it made

> everything better.

I had a negative EMG too (painful test for me!). I have negative

results for most tests, but when I had a fresh muscle biopsy, I had

no activity in Complex I, hence mitochondrial disease.

> I'm very disappointed.. The doctor was very nice..... but he did't

> even know the difference between a fresh or frozen biop. He said I

> need another biop, but he doesn't do it.

That's why I went to Georgia (1000 miles away) for a fresh muscle

biopsy, instead of going to NYC, which is about 50 miles away. I

talked to the C-P clinic on the phone once and they said " fresh

muscle biopsies aren't necessary... " The neurologist at C-P was

trying to convince me to go there for the test, but I decided to

travel instead on the hope of only having to be tested once.

> I'm at the beginng again. I don't feel like searching any more.

I went through this for 8 years (1/3 of my life, most of my adult

life). It is frustrating, and no one knows if there is an answer for

anyone. You might want to ask yourself if you need to know a

diagnosis, or maybe try some (or some more or different) components

of the mito cocktail, knowing that they can help for other conditions

too. I remember going to an endocrinologist about 2 years into this

process, and saying to myself " this could be it! I have an endocrine

problem! " . That and many other doctors were dead ends for me - some

even told me to stop seeing doctors for my " non-existent " condition.

> I'm sick of it. Between last week and this week I spent $150.00 in

> traveling alone. It took alot for me to take the train alone. I'm

> not going to get anywhere. I need to be more sick. I don't have a

> hearing loss or seizures. Just muscle weakness, fatigue, and sle.

> This could be anything or nothing.

>

> I'm very angry right now! I've tried soooooooooooooooooooo hard.

> I need to just need to live my life. I say that right now, but as

> soon as I have a big attack I'll be looking again.

>

> I don't know what to do now!

I think take it easy, try to relax, and don't overdo it. Remember

doctors are human, and don't know everything. We are *special* -

even most neurologists are clueless. I have never been hospitalized

with my symptoms, but I have spent days in bed and not been able to

see, talk, or walk from my symptoms. Yes, my case is mild too...

> Thanks for letting me vent

>

That's what we're here for - to support each other. I remember

crying when I was pregnant and first told I might have a

mitochondrial disease - I don't know if I was crying for me or my

baby or the thought that there could be an answer to what my

condition is.

Sometimes it is better to think things over for a while instead of

going to different doctors. For example, on my third visit to the

MDA clinic, one of the residents asked me " how often do you have

double vision? " and at that point, the answer was " daily, for several

hours until I go to sleep " . Until then, they thought it was just

every few weeks, but when I clarified my symptoms to them, they

decided to take notice.

My thoughts are with you, don't let C-P's reputation (I'm assuming

you went there) make you think they are the end-all, be-all of

medicine.

Take care,

RH

August 5, 2003

,

My heart goes out to you. I can't say any words to make it better, but to tell you I know that valley you are in and still spend time there.

The current neuro, said that she thought I have both MS and mitochondrial, she was going to talk to the MS doctor and get back to me...that was two weeks ago...(but it is o.k., I am just relieved that someone noticed something on of the tests...by the way I had a negative EMG as well). Then I go for my delayed visit to the neuo-opthomologist...and I was trying a new one, because the old one made me wait so long and talked too fast. This guy says...after a 6 hour visit! (mostly the resident), that he did not believe that any of the test that I had were abnormal, even though his own machine repeated the test with the same results, that the test I had three years ago...(and repeated for verification, and read by two separate doctors), was read wrong...and that I do not have MS, that there can be normal brain lesions, (the very first doctor to tell me this), and that he thinks it is a mitochondrial problem!

We then got caught in a two hour rain storm...I cried most of the way home. This guy is writing to the neuro, and I was overwhelmed with fear that his opinion might change something...(and in truth it might). BUT the next day I came to the conclusion that no matter what label they give me, (or don't), no matter what the tests show or don't, no matter how they are read or not, AND no matter if the doctor gets the details wrong...(like this guy in more than one part) or gets them right...NO MATTER, it does not change the symptoms I have lived with the past four years and it will not change my life today and it will not change the coming years. My symptoms have happened despite who believes me or what test prove it...they just have been, and short of a miracle will be simply a fact of my life for some time to come.

I have given way too many doctors, (really strangers who can not possibly grasp my complex history in a short visit), the power over my peace of mind. And the truth is that most of them are limited doctors and by that I mean, one is an eye doctor and one is a muscular neurologist and one is a MS neurologist and one is an internist and one is a gastroenterologist and one is a pulmonologist and a pediatrician...and no one except the doctor in Milwaukee has the expertise to put it all together. I think the eye doctor was out to disprove something rather than report on what he saw on my eyes...I worked with doctors for years, and God bless them I also know that they are human and many, most have huge egos and it helps their egos to SOLVE the case.

I can say all this too you, like a child acting brave in the day light...but on friday when I go for my exercise test I will be back in the boat of praying the puzzle pieces this time will continue to look like the picture that has been discussed, rather than it being a test that makes the puzzle come apart.

I am so sorry...I know that dread when you hear the test was normal, and you know you are SUPPOSE to be happy but it means no answers once again...

I can only believe that this walk makes us so much more compassionate, I know that I have become more so since I have been sick.

Please try to be good to yourself.

Vivian

EMG results : - ( and venting too

I had my emg today in new york city and of course it was neg. Of course I went to the bathroom and cried briefly. I went our to dinner with my daughter who lives in the city and it made everything better.I'm very disappointed.. The doctor was very nice..... but he did't even know the difference between a fresh or frozen biop. He said I need another biop, but he doesn't do it.I'm at the beginng again. I don't feel like searching any more. I'm sick of it. Between last week and this week I spent $150.00 in traveling alone. It took alot for me to take the train alone. I'm not going to get anywhere. I need to be more sick. I don't have a hearing loss or seizures. Just muscle weakness, fatigue, and sle. This could be anything or nothing.I'm very angry right now! I've tried soooooooooooooooooooo hard. I need to just need to live my life. I say that right now, but as soon as I have a big attack I'll be looking again.I don't know what to do now!Thanks for letting me ventMedical 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.

August 5, 2003

,

My heart goes out to you. I can't say any words to make it better, but to tell you I know that valley you are in and still spend time there.

The current neuro, said that she thought I have both MS and mitochondrial, she was going to talk to the MS doctor and get back to me...that was two weeks ago...(but it is o.k., I am just relieved that someone noticed something on of the tests...by the way I had a negative EMG as well). Then I go for my delayed visit to the neuo-opthomologist...and I was trying a new one, because the old one made me wait so long and talked too fast. This guy says...after a 6 hour visit! (mostly the resident), that he did not believe that any of the test that I had were abnormal, even though his own machine repeated the test with the same results, that the test I had three years ago...(and repeated for verification, and read by two separate doctors), was read wrong...and that I do not have MS, that there can be normal brain lesions, (the very first doctor to tell me this), and that he thinks it is a mitochondrial problem!

We then got caught in a two hour rain storm...I cried most of the way home. This guy is writing to the neuro, and I was overwhelmed with fear that his opinion might change something...(and in truth it might). BUT the next day I came to the conclusion that no matter what label they give me, (or don't), no matter what the tests show or don't, no matter how they are read or not, AND no matter if the doctor gets the details wrong...(like this guy in more than one part) or gets them right...NO MATTER, it does not change the symptoms I have lived with the past four years and it will not change my life today and it will not change the coming years. My symptoms have happened despite who believes me or what test prove it...they just have been, and short of a miracle will be simply a fact of my life for some time to come.

I have given way too many doctors, (really strangers who can not possibly grasp my complex history in a short visit), the power over my peace of mind. And the truth is that most of them are limited doctors and by that I mean, one is an eye doctor and one is a muscular neurologist and one is a MS neurologist and one is an internist and one is a gastroenterologist and one is a pulmonologist and a pediatrician...and no one except the doctor in Milwaukee has the expertise to put it all together. I think the eye doctor was out to disprove something rather than report on what he saw on my eyes...I worked with doctors for years, and God bless them I also know that they are human and many, most have huge egos and it helps their egos to SOLVE the case.

I can say all this too you, like a child acting brave in the day light...but on friday when I go for my exercise test I will be back in the boat of praying the puzzle pieces this time will continue to look like the picture that has been discussed, rather than it being a test that makes the puzzle come apart.

I am so sorry...I know that dread when you hear the test was normal, and you know you are SUPPOSE to be happy but it means no answers once again...

I can only believe that this walk makes us so much more compassionate, I know that I have become more so since I have been sick.

Please try to be good to yourself.

Vivian

EMG results : - ( and venting too

I had my emg today in new york city and of course it was neg. Of course I went to the bathroom and cried briefly. I went our to dinner with my daughter who lives in the city and it made everything better.I'm very disappointed.. The doctor was very nice..... but he did't even know the difference between a fresh or frozen biop. He said I need another biop, but he doesn't do it.I'm at the beginng again. I don't feel like searching any more. I'm sick of it. Between last week and this week I spent $150.00 in traveling alone. It took alot for me to take the train alone. I'm not going to get anywhere. I need to be more sick. I don't have a hearing loss or seizures. Just muscle weakness, fatigue, and sle. This could be anything or nothing.I'm very angry right now! I've tried soooooooooooooooooooo hard. I need to just need to live my life. I say that right now, but as soon as I have a big attack I'll be looking again.I don't know what to do now!Thanks for letting me ventMedical 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.

August 5, 2003

,

My heart goes out to you. I can't say any words to make it better, but to tell you I know that valley you are in and still spend time there.

The current neuro, said that she thought I have both MS and mitochondrial, she was going to talk to the MS doctor and get back to me...that was two weeks ago...(but it is o.k., I am just relieved that someone noticed something on of the tests...by the way I had a negative EMG as well). Then I go for my delayed visit to the neuo-opthomologist...and I was trying a new one, because the old one made me wait so long and talked too fast. This guy says...after a 6 hour visit! (mostly the resident), that he did not believe that any of the test that I had were abnormal, even though his own machine repeated the test with the same results, that the test I had three years ago...(and repeated for verification, and read by two separate doctors), was read wrong...and that I do not have MS, that there can be normal brain lesions, (the very first doctor to tell me this), and that he thinks it is a mitochondrial problem!

We then got caught in a two hour rain storm...I cried most of the way home. This guy is writing to the neuro, and I was overwhelmed with fear that his opinion might change something...(and in truth it might). BUT the next day I came to the conclusion that no matter what label they give me, (or don't), no matter what the tests show or don't, no matter how they are read or not, AND no matter if the doctor gets the details wrong...(like this guy in more than one part) or gets them right...NO MATTER, it does not change the symptoms I have lived with the past four years and it will not change my life today and it will not change the coming years. My symptoms have happened despite who believes me or what test prove it...they just have been, and short of a miracle will be simply a fact of my life for some time to come.

I have given way too many doctors, (really strangers who can not possibly grasp my complex history in a short visit), the power over my peace of mind. And the truth is that most of them are limited doctors and by that I mean, one is an eye doctor and one is a muscular neurologist and one is a MS neurologist and one is an internist and one is a gastroenterologist and one is a pulmonologist and a pediatrician...and no one except the doctor in Milwaukee has the expertise to put it all together. I think the eye doctor was out to disprove something rather than report on what he saw on my eyes...I worked with doctors for years, and God bless them I also know that they are human and many, most have huge egos and it helps their egos to SOLVE the case.

I can say all this too you, like a child acting brave in the day light...but on friday when I go for my exercise test I will be back in the boat of praying the puzzle pieces this time will continue to look like the picture that has been discussed, rather than it being a test that makes the puzzle come apart.

I am so sorry...I know that dread when you hear the test was normal, and you know you are SUPPOSE to be happy but it means no answers once again...

I can only believe that this walk makes us so much more compassionate, I know that I have become more so since I have been sick.

Please try to be good to yourself.

Vivian

EMG results : - ( and venting too

I had my emg today in new york city and of course it was neg. Of course I went to the bathroom and cried briefly. I went our to dinner with my daughter who lives in the city and it made everything better.I'm very disappointed.. The doctor was very nice..... but he did't even know the difference between a fresh or frozen biop. He said I need another biop, but he doesn't do it.I'm at the beginng again. I don't feel like searching any more. I'm sick of it. Between last week and this week I spent $150.00 in traveling alone. It took alot for me to take the train alone. I'm not going to get anywhere. I need to be more sick. I don't have a hearing loss or seizures. Just muscle weakness, fatigue, and sle. This could be anything or nothing.I'm very angry right now! I've tried soooooooooooooooooooo hard. I need to just need to live my life. I say that right now, but as soon as I have a big attack I'll be looking again.I don't know what to do now!Thanks for letting me ventMedical 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.

August 6, 2003

,

Your frustrations are completely understandable. Vent anytime you need to. I've done my fair share of late. Hope today looks brighter for you and you feel better too. HUgs,

August 6, 2003

EMGs are funny things. They can't tell you a great deal, but are a good tool

for some things. I went years with a normal EMG. After this, I had abnormal

EMGs for myopathy and a few years later for neuropathy. After 4 months of

physical therapy for my shoulder, the EMG for my arm was normal again for

myopathy. This could have been due to conditioning the arm or due to the

nerve that was compressed, but the nerve compression should have shown up on

the EMG. Also, and EMG is only as good as the person doing the test. This is

what my neurologist who teaches med. residents to do EMGs. They have to do

the test right and be able to interpret what they see. They also need to be

good at moving the needle to get a better response. I had one EMG, by

another doc, that showed weird things. He called in everyone from the

department to look at it and none of them knew what it was, so it was

reported as a normal EMG.

I hope this helps you to put this in perspective. I also got discouraged

after about 6 years of looking for a diagnosis and then took about 4 years

off from the hunt, and this is an okay thing if you need to do this.

laurie

>

> Reply-To:

> Date: Wed, 06 Aug 2003 02:36:36 -0000

> To:

> Subject: EMG results : - ( and venting too

>

> I had my emg today in new york city and of course it was neg. Of

> course I went to the bathroom and cried briefly. I went our to

> dinner with my daughter who lives in the city and it made everything

> better.

>

> I'm very disappointed.. The doctor was very nice..... but he did't

> even know the difference between a fresh or frozen biop. He said I

> need another biop, but he doesn't do it.

>

> I'm at the beginng again. I don't feel like searching any more. I'm

> sick of it. Between last week and this week I spent $150.00 in

> traveling alone. It took alot for me to take the train alone. I'm

> not going to get anywhere. I need to be more sick. I don't have a

> hearing loss or seizures. Just muscle weakness, fatigue, and sle.

> This could be anything or nothing.

>

> I'm very angry right now! I've tried soooooooooooooooooooo hard. I

> need to just need to live my life. I say that right now, but as

> soon as I have a big attack I'll be looking again.

>

> I don't know what to do now!

>

> Thanks for letting me vent

>

August 6, 2003

vivian

I am glad you have come to this place in your search, as it seems to be a

healthy one.

One word, about the exercise test. Mine was normal, even though my symptoms

were there and I had been diagnosed. It did show abnormalities, but they

were considered insignificant. Medicine just has to progress further than it

is right now. I am hopeful, since it keeps progressing at a faster pace each

year.

Good luck with the test.

laurie

>

> Reply-To:

> Date: Tue, 5 Aug 2003 23:52:47 -0500

> To: < >

> Subject: Re: EMG results : - ( and venting too

>

> ,

>

> My heart goes out to you. I can't say any words to make it better, but to

> tell you I know that valley you are in and still spend time there.

>

> The current neuro, said that she thought I have both MS and mitochondrial, she

> was going to talk to the MS doctor and get back to me...that was two weeks

> ago...(but it is o.k., I am just relieved that someone noticed something on of

> the tests...by the way I had a negative EMG as well). Then I go for my

> delayed visit to the neuo-opthomologist...and I was trying a new one, because

> the old one made me wait so long and talked too fast. This guy says...after a

> 6 hour visit! (mostly the resident), that he did not believe that any of the

> test that I had were abnormal, even though his own machine repeated the test

> with the same results, that the test I had three years ago...(and repeated for

> verification, and read by two separate doctors), was read wrong...and that I

> do not have MS, that there can be normal brain lesions, (the very first doctor

> to tell me this), and that he thinks it is a mitochondrial problem!

>

> We then got caught in a two hour rain storm...I cried most of the way home.

> This guy is writing to the neuro, and I was overwhelmed with fear that his

> opinion might change something...(and in truth it might). BUT the next day I

> came to the conclusion that no matter what label they give me, (or don't), no

> matter what the tests show or don't, no matter how they are read or not, AND

> no matter if the doctor gets the details wrong...(like this guy in more than

> one part) or gets them right...NO MATTER, it does not change the symptoms I

> have lived with the past four years and it will not change my life today and

> it will not change the coming years. My symptoms have happened despite who

> believes me or what test prove it...they just have been, and short of a

> miracle will be simply a fact of my life for some time to come.

>

> I have given way too many doctors, (really strangers who can not possibly

> grasp my complex history in a short visit), the power over my peace of mind.

> And the truth is that most of them are limited doctors and by that I mean, one

> is an eye doctor and one is a muscular neurologist and one is a MS neurologist

> and one is an internist and one is a gastroenterologist and one is a

> pulmonologist and a pediatrician...and no one except the doctor in Milwaukee

> has the expertise to put it all together. I think the eye doctor was out to

> disprove something rather than report on what he saw on my eyes...I worked

> with doctors for years, and God bless them I also know that they are human and

> many, most have huge egos and it helps their egos to SOLVE the case.

>

> I can say all this too you, like a child acting brave in the day light...but

> on friday when I go for my exercise test I will be back in the boat of praying

> the puzzle pieces this time will continue to look like the picture that has

> been discussed, rather than it being a test that makes the puzzle come apart.

>

> I am so sorry...I know that dread when you hear the test was normal, and you

> know you are SUPPOSE to be happy but it means no answers once again...

>

> I can only believe that this walk makes us so much more compassionate, I know

> that I have become more so since I have been sick.

>

> Please try to be good to yourself.

>

> Vivian

> EMG results : - ( and venting too

>

> I had my emg today in new york city and of course it was neg. Of

> course I went to the bathroom and cried briefly. I went our to

> dinner with my daughter who lives in the city and it made everything

> better.

>

> I'm very disappointed.. The doctor was very nice..... but he did't

> even know the difference between a fresh or frozen biop. He said I

> need another biop, but he doesn't do it.

>

> I'm at the beginng again. I don't feel like searching any more. I'm

> sick of it. Between last week and this week I spent $150.00 in

> traveling alone. It took alot for me to take the train alone. I'm

> not going to get anywhere. I need to be more sick. I don't have a

> hearing loss or seizures. Just muscle weakness, fatigue, and sle.

> This could be anything or nothing.

>

> I'm very angry right now! I've tried soooooooooooooooooooo hard. I

> need to just need to live my life. I say that right now, but as

> soon as I have a big attack I'll be looking again.

>

> I don't know what to do now!

>

> Thanks for letting me vent

>

August 6, 2003