Re: RE:sad news...let down...disappointed.

[Guest guest]

Hang in there Vivian. Thinking about you!

O

[Guest guest]

I had a negative EMG as well, but knowledgeable mito docs should know

that it doesn't mean there isn't a mitochondrial problem. Maybe you

should be posting to find a better (or different at least) mito doc

in your area. I went to 10 neurologists before I found one

knowledgeable enough in neuromuscular diseases to suspect mito.

Perhaps your doc would like to see my EMG results (negative) and

muscle biopsy results (definite mito defects) so he can decide if he

or the people who see mito patients all day every day are wrong.

Take care,

RH

[Guest guest]

Vivian,

I am sorry to hear of this setback. I have always had negative

EMG's and I do have a mito diagnosis. So it is possible. Hopefully

things will turn around, especially since you have all your symptoms

listed and such. I will be thinking of you. You are right, there is

always a plan!

Smiles,

a

Hi Guys,

Remember that I was glad that my neuro was recommending me to a

neuromuscular specialist at Northwestern Memorial.and my neuro talked to

him and the guy said that he would see me if my EMG was positive or

negative? Well I had the EMG and it was negative, and the neuromuscular

doctor won't see me now.he said he most often does not do muscle

biopsies unless the EMG is positive. He wants my pulmonologist to call

him, (whom I have only seen once), to tell him if she thinks I need to

follow up with him.

Anyway I'm sad about this. I had hoped that his doc knew so much about

mito that he would know that a negative EMG does not rule mito in or

out, (or at least this is what I understand of it).

I believe that God has a plan and a timing for everything. I am putting

my faith in the fact I believe with all my heart that God either has the

right doctor and the right timing for me to get a diagnosis.or a plan

for me to live without one. (But, in those times that I have hope to

get closer to one and don't there is a pause of disappointment).

I have more.many more documented symptoms than my son does.I sure hope

Dr. Cohen will take the whole picture into account when he sees Jack in

March. I'm also hoping that these doctors will take any recommendations

he has.

Thanks for listening.

Vivian

[Guest guest]

RH,

Thank you for the encouragement. It is easy to believe that the doc's

know what they are talking about when they say something so definitive.

I still am amazed at the things I have heard doc's say of what is mito

and what it is not. Anyway.thanks again.

Re: RE:sad news...let down...disappointed.

I had a negative EMG as well, but knowledgeable mito docs should know

that it doesn't mean there isn't a mitochondrial problem. Maybe you

should be posting to find a better (or different at least) mito doc

in your area. I went to 10 neurologists before I found one

knowledgeable enough in neuromuscular diseases to suspect mito.

Perhaps your doc would like to see my EMG results (negative) and

muscle biopsy results (definite mito defects) so he can decide if he

or the people who see mito patients all day every day are wrong.

Take care,

RH

[Guest guest]

a,

Thanks for the encouragement. It is good to hear that there are others

with a negative emg and a mito diagnosis.

Vivian

Re: RE:sad news...let down...disappointed.

Vivian,

I am sorry to hear of this setback. I have always had negative

EMG's and I do have a mito diagnosis. So it is possible. Hopefully

things will turn around, especially since you have all your symptoms

listed and such. I will be thinking of you. You are right, there is

always a plan!

Smiles,

a

Hi Guys,

Remember that I was glad that my neuro was recommending me to a

neuromuscular specialist at Northwestern Memorial.and my neuro talked to

him and the guy said that he would see me if my EMG was positive or

negative? Well I had the EMG and it was negative, and the neuromuscular

doctor won't see me now.he said he most often does not do muscle

biopsies unless the EMG is positive. He wants my pulmonologist to call

him, (whom I have only seen once), to tell him if she thinks I need to

follow up with him.

Anyway I'm sad about this. I had hoped that his doc knew so much about

mito that he would know that a negative EMG does not rule mito in or

out, (or at least this is what I understand of it).

I believe that God has a plan and a timing for everything. I am putting

my faith in the fact I believe with all my heart that God either has the

right doctor and the right timing for me to get a diagnosis.or a plan

for me to live without one. (But, in those times that I have hope to

get closer to one and don't there is a pause of disappointment).

I have more.many more documented symptoms than my son does.I sure hope

Dr. Cohen will take the whole picture into account when he sees Jack in

March. I'm also hoping that these doctors will take any recommendations

he has.

Thanks for listening.

Vivian

[Guest guest]

Vivian,

This disease is so hard. We have so many ups and

downs and I'm sorry you have just experienced one of

those downs.

Remember...the doctors do not have much knowledge

about this disease and even those that do rarely

agree.

Keep your chin up! We are here for you.

Alice

[Guest guest]

My EMG should a " little " bit of small fiber neuropathy. My QST test screamed

neuropathy though. Try to find a doc that can perform that test!

Carol

P.S. My current neuro is convinced I have mito, even before I am leaving for

Shoffner's office next week...

[Guest guest]

Carol,

Wow, how cool that your neuro is behind you so much. What is a QST

test? I have never heard of it.

Thanks,

Vivian

Re: RE:sad news...let down...disappointed.

My EMG should a " little " bit of small fiber neuropathy. My QST test

screamed neuropathy though. Try to find a doc that can perform that

test!

Carol

P.S. My current neuro is convinced I have mito, even before I am

leaving for Shoffner's office next week...

[Guest guest]

Nan,

Hope you catch this the next time you are on. You are truly a giving

and kindhearted person, that when you are bone tired you reach out to

help even another person who may be effected by this illness. May all

the blessing you give out come back to you.

I love northwestern.it is an incredible hospital. My problem is that

like RH, I don't look terribly sick. I have the symptoms and the tests,

MRI's etc. to back up that something is going wrong.but I am not

critical to anyone who would go by appearances. Unfortunately, the

neuromuscular guy came by when the EMG was being done. My neuro (MS

specialist), and my internist are great, but they have never had a

patient with mito, and the pulmonologist wants to treat the asthma

before trying to diagnose the neuromuscular problem with the lungs that

showed up on the PFT test.

Anyway, I guess I'm better off anyway.I really don't want to see a doc

who is not familiar enough with the illness to know that an negative

EMG does not mean that mito is not there. Oh, well. I feel really

privledged to be at northwestern. I am just surprised that as big and

prestigious as it is that there is not a counterpart of Dr. Cohen's from

Cleveland there.

Thanks for sharing.remember to take care of yourself, so you can keep up

with all those in your life who depend on you.

Vivian

Fw: RE:sad news...let down...disappointed.

Re: RE:sad news...let down...disappointed.

Vivian -

I had taken a couple of days off and wasn't planning on looking at the

emails tonight either - just plain tired. But, I have had such good luck

with the doctors at the MDA clinic at Northwestern that I thought I

would mention them. I spoke with the coordinator many times before we

were actually able to set up an evaluation for my stepdaughter. We were

hampered by the fact that was never OUT of the hospital long

enough to make a switch from her moronic HMO doctors (oops - sorry --

did I type that?!?!?). But, we were lucky enough that when she was

discharged following a bad episode on December 4 and then on December 5

was in such pain that we had to get her back to the hospital (nothing

was working to alleviate the pain). Instead of taking her back to the

hospital that she had just come from, we took her to the ER of a

hospital about a mile from our house. We also took with us a notebook

that I keep explaining about Mito diseases, listing her current meds,

showing her most recent labs, as well as her TPN formula's and all

possible contact information. The ER doctor was very interested and

extremely helpful. I had previously faxed some of our paperwork to the

MDA clinic coordinator so that they would have what they needed in case

we just " showed up " on their doorstep.

Anyway - I don't know if you have gotten in touch with the MDA clinic

(you can find info about them at the MDA website or I can get the phone

number to you) but the staff there is wonderful and they have a wealth

of information and resources available to them.

I will post (probably sometime in the next week or so) and sing the

praises of the Clinic at Northwestern again. I will tell more of the

story of 's clinic visit and the motorized wheelchair that is being

ordered, etc. etc.

Right now, I am really really tired. My life is consumed by this disease

and I am nothing more or less than a caregiver. I need to keep reminding

myself that I have a life too . . . I just don't know where it is right

now.

Ciao -

Nan

[Guest guest]

A QST test is a Quantitative Sensory Test which indicates small fiber

neuropathy. Not many hospitals have it. It is a machine which measures your

reaction to hot and cold. Not painful at all. Used in conjunction with an EMG

it is quite helpful.

Carol

Re: RE:sad news...let down...disappointed.

My EMG should a " little " bit of small fiber neuropathy. My QST test

screamed neuropathy though. Try to find a doc that can perform that

test!

Carol

P.S. My current neuro is convinced I have mito, even before I am

leaving for Shoffner's office next week...

[Guest guest]

Carol, What a great idea! I have lost all sensory of my outer skin.Pin

pricks do not feel like anything and I cannot feel water on my

legs.(here's hoping for no accidents!) I can go out in the snow in my

bare feet. (Not a good idea, but I tried to see if it would feel cold.

It did not. I always need to be careful in getting things out of the

oven.I am burnt before I feel the pain! I am going to call my neuro and

ask about it Monday.

Thanks again!

Vivian

Re: RE:sad news...let down...disappointed.

A QST test is a Quantitative Sensory Test which indicates small fiber

neuropathy. Not many hospitals have it. It is a machine which measures

your reaction to hot and cold. Not painful at all. Used in conjunction

with an EMG it is quite helpful.

Carol

Re: RE:sad news...let down...disappointed.

My EMG should a " little " bit of small fiber neuropathy. My QST test

screamed neuropathy though. Try to find a doc that can perform that

test!

Carol

P.S. My current neuro is convinced I have mito, even before I am

leaving for Shoffner's office next week...

[Guest guest]

Vivian--loss of feeling whatever is supposedly a definite sign of mito per

Dr Tick. I am not sure what the exact test I had in 1997, but it was

because I did not have feeling on the top of my foot. I think it was with

needles though. It was done at the hospital in Milwaukee with Dr Tick and

Dr Peltier.

Janet

Re: RE:sad news...let down...disappointed.

>

> My EMG should a " little " bit of small fiber neuropathy. My QST test

> screamed neuropathy though. Try to find a doc that can perform that

> test!

>

> Carol

>

> P.S. My current neuro is convinced I have mito, even before I am

> leaving for Shoffner's office next week...

>

>

>

>

>