Re: hohum...enough of the doctors for now

[Guest guest]

I'm sorry you are having these problems and no answers. I went through

something similar and just took some time out from doctors. I am sure

you will find the right path for yourself when the time is right.

Living as best as you can sounds like a good path for you right now.

You will be in my thoughts.

laurie

> Hey everyone,

>

> I hope everyone had a wonderful Christmas and a great start to the New

> Year. Unfortunately my new year started off horrible as I had a massive

> virus attack on my computer that took me two weeks to get straightened

> around. Now I am back online.

>

> Other info is that my muscle biopsy came back completely normal, and even

> though my carnitines and things were out of range on my blood test and

> metabolic panel, Dr. Cohen does not feel that I have a mito disorder. I

> think that I don't agree with him but I am just a nobody patient. Dr.

> Simpson doesn't want to push to get me into Dr. Hirano at Columbia

> Presbyterian too quickly but that is okay.

>

> I do want to say that I too am having the irregular heartbeat issues as

> does many of you, and it gets so bad that my heart will stop beating and

> make me feel like my heart is going to blow out of my chest. Yet I am on a

> holter 30 day cardiac monitor and my cardiologist feels that the skips that

> I am having are perfectly normal. Of course I have only been having them

> for a few months and haven't them before that. And of course since my

> biopsy and report came back from Cleveland Clinic normal Dr. Simpson won't

> push my cardiologist on anything.

>

> And also on my SLE's, he is going back to think that they are from some

> kind of stroke problem and wants me to see a neurologist locally. So I am

> being pushed off again.

>

> But you know what folks, I am giving this all to the Lord right now, and

> letting Him deal with this because I really don't think that these doctors

> have a clue what is going on.

>

> I am focusing on my ministry with my church, starting my own business,

> and being a father and husband for as long as I am allowed by God. I guess

> you can say that my faith in Doctors isn't anymore.

>

> I will continue to read posts on here, but probably won't respond unless

> one is directed to me. I will continue to have my mitohope.com website for

> as long as can run it, and I will pray for you all every day and especially

> that these doctors will get their heads out of the sand and really try to

> help the patients and not just get their names on and in papers.

>

> Love and Friendship to you all for being there for me so much.

>

> McCombs

> 1 5:9-12

>

>

>

>

> ---------------------------------

> Yahoo! Photos

> Ring in the New Year with Photo Calendars. Add photos, events, holidays,

> whatever.

>

>

[Guest guest]

,

Hang in there, I know I also had to take a break from docs during my

search for answers to regroup and relax some. You may decide to pick

things up again in the future.

At least the new year began with a visus attack on your computer, not a

virus attack on , although I'm sure that was frustrating as all get

out all the same. :-)

Let us know how things are going when you feel up to it as we will be

thinking of you.

FYI, before I had a dx, I was put on Carnitor because my labs were low.

I tried going off of it after being on for about 1 year or so and had a

dramatic set-back and had to go back on it. If you are on the mito

cocktail and are getting some help from it, I wouldn't think it would

hurt to continue.

McCombs wrote:

>Hey everyone,

>

> I hope everyone had a wonderful Christmas and a great start to the New Year.

Unfortunately my new year started off horrible as I had a massive virus attack

on my computer that took me two weeks to get straightened around. Now I am back

online.

>

> Other info is that my muscle biopsy came back completely normal, and even

though my carnitines and things were out of range on my blood test and metabolic

panel, Dr. Cohen does not feel that I have a mito disorder. I think that I

don't agree with him but I am just a nobody patient. Dr. Simpson doesn't want

to push to get me into Dr. Hirano at Columbia Presbyterian too quickly but that

is okay.

>

> I do want to say that I too am having the irregular heartbeat issues as does

many of you, and it gets so bad that my heart will stop beating and make me feel

like my heart is going to blow out of my chest. Yet I am on a holter 30 day

cardiac monitor and my cardiologist feels that the skips that I am having are

perfectly normal. Of course I have only been having them for a few months and

haven't them before that. And of course since my biopsy and report came back

from Cleveland Clinic normal Dr. Simpson won't push my cardiologist on anything.

>

> And also on my SLE's, he is going back to think that they are from some kind

of stroke problem and wants me to see a neurologist locally. So I am being

pushed off again.

>

> But you know what folks, I am giving this all to the Lord right now, and

letting Him deal with this because I really don't think that these doctors have

a clue what is going on.

>

> I am focusing on my ministry with my church, starting my own business, and

being a father and husband for as long as I am allowed by God. I guess you can

say that my faith in Doctors isn't anymore.

>

> I will continue to read posts on here, but probably won't respond unless one

is directed to me. I will continue to have my mitohope.com website for as long

as can run it, and I will pray for you all every day and especially that these

doctors will get their heads out of the sand and really try to help the patients

and not just get their names on and in papers.

>

> Love and Friendship to you all for being there for me so much.

>

> McCombs

> 1 5:9-12

>

>

>

>

>---------------------------------

>Yahoo! Photos

> Ring in the New Year with Photo Calendars. Add photos, events, holidays,

whatever.

>

>

[Guest guest]

,

Hang in there, I know I also had to take a break from docs during my

search for answers to regroup and relax some. You may decide to pick

things up again in the future.

At least the new year began with a virus attack on your computer, not a

virus attack on , although I'm sure that was frustrating as all get

out all the same. :-)

Let us know how things are going when you feel up to it as we will be

thinking of you.

FYI, before I had a dx, I was put on Carnitor because my labs were low.

I tried going off of it after being on for about 1 year or so and had a

dramatic set-back and had to go back on it. If you are on the mito

cocktail and are getting some help from it, I wouldn't think it would

hurt to continue.

McCombs wrote:

>Hey everyone,

>

> I hope everyone had a wonderful Christmas and a great start to the New Year.

Unfortunately my new year started off horrible as I had a massive virus attack

on my computer that took me two weeks to get straightened around. Now I am back

online.

>

> Other info is that my muscle biopsy came back completely normal, and even

though my carnitines and things were out of range on my blood test and metabolic

panel, Dr. Cohen does not feel that I have a mito disorder. I think that I

don't agree with him but I am just a nobody patient. Dr. Simpson doesn't want

to push to get me into Dr. Hirano at Columbia Presbyterian too quickly but that

is okay.

>

> I do want to say that I too am having the irregular heartbeat issues as does

many of you, and it gets so bad that my heart will stop beating and make me feel

like my heart is going to blow out of my chest. Yet I am on a holter 30 day

cardiac monitor and my cardiologist feels that the skips that I am having are

perfectly normal. Of course I have only been having them for a few months and

haven't them before that. And of course since my biopsy and report came back

from Cleveland Clinic normal Dr. Simpson won't push my cardiologist on anything.

>

> And also on my SLE's, he is going back to think that they are from some kind

of stroke problem and wants me to see a neurologist locally. So I am being

pushed off again.

>

> But you know what folks, I am giving this all to the Lord right now, and

letting Him deal with this because I really don't think that these doctors have

a clue what is going on.

>

> I am focusing on my ministry with my church, starting my own business, and

being a father and husband for as long as I am allowed by God. I guess you can

say that my faith in Doctors isn't anymore.

>

> I will continue to read posts on here, but probably won't respond unless one

is directed to me. I will continue to have my mitohope.com website for as long

as can run it, and I will pray for you all every day and especially that these

doctors will get their heads out of the sand and really try to help the patients

and not just get their names on and in papers.

>

> Love and Friendship to you all for being there for me so much.

>

> McCombs

> 1 5:9-12

>

>

>

>

>---------------------------------

>Yahoo! Photos

> Ring in the New Year with Photo Calendars. Add photos, events, holidays,

whatever.

>

>

[Guest guest]

,

I am really sorry for what you are going through...I have been there

and it is so hard to know that something is wrong and to be told

that it isn't.

It is really hard when it feels like the doctors have given up on

you. I was really, really, sick once and all the neurologist kept

saying is " I don't know how to help you. " This was a couple of

years ago, before the mitochondrial diagnosis was even in play...but

it felt like being abandoned.

I know that you believe in God, He made you and He knows what your

body is doing now...I really sorry about your not getting answers

right now. I think that you will find everyone on this board had a

long time of being lost in the maze.

I will pray for you.

Vivian

>

> Hey everyone,

>

> I hope everyone had a wonderful Christmas and a great start to

the New Year. Unfortunately my new year started off horrible as I

had a massive virus attack on my computer that took me two weeks to

get straightened around. Now I am back online.

>

> Other info is that my muscle biopsy came back completely normal,

and even though my carnitines and things were out of range on my

blood test and metabolic panel, Dr. Cohen does not feel that I have

a mito disorder. I think that I don't agree with him but I am just

a nobody patient. Dr. Simpson doesn't want to push to get me into

Dr. Hirano at Columbia Presbyterian too quickly but that is okay.

>

> I do want to say that I too am having the irregular heartbeat

issues as does many of you, and it gets so bad that my heart will

stop beating and make me feel like my heart is going to blow out of

my chest. Yet I am on a holter 30 day cardiac monitor and my

cardiologist feels that the skips that I am having are perfectly

normal. Of course I have only been having them for a few months and

haven't them before that. And of course since my biopsy and report

came back from Cleveland Clinic normal Dr. Simpson won't push my

cardiologist on anything.

>

> And also on my SLE's, he is going back to think that they are

from some kind of stroke problem and wants me to see a neurologist

locally. So I am being pushed off again.

>

> But you know what folks, I am giving this all to the Lord right

now, and letting Him deal with this because I really don't think

that these doctors have a clue what is going on.

>

> I am focusing on my ministry with my church, starting my own

business, and being a father and husband for as long as I am allowed

by God. I guess you can say that my faith in Doctors isn't anymore.

>

> I will continue to read posts on here, but probably won't

respond unless one is directed to me. I will continue to have my

mitohope.com website for as long as can run it, and I will pray for

you all every day and especially that these doctors will get their

heads out of the sand and really try to help the patients and not

just get their names on and in papers.

>

> Love and Friendship to you all for being there for me so much.

>

> McCombs

> 1 5:9-12

>

>

>

>

> ---------------------------------

> Yahoo! Photos

> Ring in the New Year with Photo Calendars. Add photos, events,

holidays, whatever.

>

>