Re: Mito Doc? Another Question

[Guest guest]

I still see Dr. Cohen every year or so, but my care is basically

managed by my MDA adult neurologist. I also have a nephrologist,

cardiologist, internist and pulmonologist. I still haven't found a way

for them to use a team approach as they are in different cities and

for some reason, that seems to be a negative to the team approach. My

internist tries to act as the laison when I am going to have surgery

locally. This has been helpful.

Finding docs who even want to deal with mito is sometimes a real

challenge. Good luck in finding what you need.

laurie

>

> I have so many questions for you veterans! My diagnosis was confirmed

> by Dr. Cohen at the Cleveland Clinic (I know I was lucky to get in to

> see him at all), but now it seems that he doesn't have time to follow

> my case. The doctor who referred me is a psychiatric intern that I

> see for depression/ bipolar symptoms, and I have a " referring

> physician " (who seems to do nothing but refer me to specialists!). So

> - I'm not sure at this point who's in charge of my care. Before I ask

> the docs, do y'all have suggestions about what an ideal care team

> would look like? Thanks again,

>

>

>

>

>

>

>

>

>

> 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]

,

There are people in this group who seem to have a more ideal team than

I do. Still, I like mine. My primary care physician coordinates

everything. He is my referring physician, too, and he reads all the

reports from specialists--and occasionally talks with them directly. I

like the arrangement because there is one person who has a view of the

whole picture. (Even if the picture is sometimes quite confusing!). Do

you have a supportive primary care doc who understands that people

like us require more time than the average patient? For me, it was

worth looking for.

Best,

Shayna

>

> I have so many questions for you veterans! My diagnosis was confirmed

> by Dr. Cohen at the Cleveland Clinic (I know I was lucky to get in to

> see him at all), but now it seems that he doesn't have time to follow

> my case. The doctor who referred me is a psychiatric intern that I

> see for depression/ bipolar symptoms, and I have a " referring

> physician " (who seems to do nothing but refer me to specialists!). So

> - I'm not sure at this point who's in charge of my care. Before I ask

> the docs, do y'all have suggestions about what an ideal care team

> would look like? Thanks again,

>

[Guest guest]

Thanks, Shayna: it does sound like your arrangement would work for me

.. . . if I had any faith that my primary understands what needs to be

done. I spoke with him yesterday to get a referral to a movement

specialist re tremors and also to start figuring out who's supposed to

coordinate my care. His view was that Dr. Cohen should do that - but

of course Dr. Cohen has already told me that his schedule doesn't

permit him to follow adult patients. Already fragile, I got upset --

and he agreed to contact Dr. Cohen to find out what we should be

doing. I guess he was trying to comfort me when he then said " about

mitochondrial disease - try not to worry so much - mostly it just

means taking Co Q-10 so it won't get worse. " So I don't have much

faith . . .

> >

> > I have so many questions for you veterans! My diagnosis was confirmed

> > by Dr. Cohen at the Cleveland Clinic (I know I was lucky to get in to

> > see him at all), but now it seems that he doesn't have time to follow

> > my case. The doctor who referred me is a psychiatric intern that I

> > see for depression/ bipolar symptoms, and I have a " referring

> > physician " (who seems to do nothing but refer me to specialists!). So

> > - I'm not sure at this point who's in charge of my care. Before I ask

> > the docs, do y'all have suggestions about what an ideal care team

> > would look like? Thanks again,

> >

>

[Guest guest]

Laurie: It is remarkably frustrating to try to get them to talk to

each other, isn't it?!? And as you said, I'm already walking into

roadblocks trying to get anyone to take the condition seriously -

besides Dr. Cohen, who doesn't have time in his schedule to follow

another adult patient. Both the psychiatric resident who first

mentioned mito and my primary seem to think this is no big deal

(despite the life-changing symptoms I'm experiencing) - and that all I

have to do is take Co Q-10. (see my reply to Shayna). Do I just wait

for a problem to come up and then ask for a referral to the

appropriate specialist? Or are there regular screenings I should

have? I know, for example, that I have developed a heart block and

arrythmia - I don't feel any worse in that respect than I did a year

ago, but, given the mitochondrial diagnosis, it would seem prudent to

me to have EKGs every once in a while to make sure nothing has

changed. Thanks so much, everybody! I finally feel like I've found

somebody(s) that it makes sense to talk with.

> >

> > I have so many questions for you veterans! My diagnosis was

confirmed

> > by Dr. Cohen at the Cleveland Clinic (I know I was lucky to get in to

> > see him at all), but now it seems that he doesn't have time to follow

> > my case. The doctor who referred me is a psychiatric intern that I

> > see for depression/ bipolar symptoms, and I have a " referring

> > physician " (who seems to do nothing but refer me to

specialists!). So

> > - I'm not sure at this point who's in charge of my care. Before

I ask

> > the docs, do y'all have suggestions about what an ideal care team

> > would look like? Thanks again,

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > 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]

It takes a doctor that is interested, but they can learn. Once I find

a doctor that seems interested, I gradually give them information -

not demanding that they read it, but giving it to them since they seem

interested. Over time, a doctor that takes an interest in you and in

mito is often better than one who has lots of information to begin

with. Since there aren't many mito docs out there, it becomes out job

to educate them and the public. At least this has been my experience.

That is not to say that I haven't had some bad experiences. There are

lots of articles on the UMDF website that have lots of good

information, including one on treating adults with mito.

laurie

>

> Thanks, Shayna: it does sound like your arrangement would work for me

> . . . if I had any faith that my primary understands what needs to be

> done. I spoke with him yesterday to get a referral to a movement

> specialist re tremors and also to start figuring out who's supposed to

> coordinate my care. His view was that Dr. Cohen should do that - but

> of course Dr. Cohen has already told me that his schedule doesn't

> permit him to follow adult patients. Already fragile, I got upset --

> and he agreed to contact Dr. Cohen to find out what we should be

> doing. I guess he was trying to comfort me when he then said " about

> mitochondrial disease - try not to worry so much - mostly it just

> means taking Co Q-10 so it won't get worse. " So I don't have much

> faith . . .

>

>

>

> > >

> > > I have so many questions for you veterans! My diagnosis was confirmed

> > > by Dr. Cohen at the Cleveland Clinic (I know I was lucky to get in to

> > > see him at all), but now it seems that he doesn't have time to follow

> > > my case. The doctor who referred me is a psychiatric intern that I

> > > see for depression/ bipolar symptoms, and I have a " referring

> > > physician " (who seems to do nothing but refer me to specialists!). So

> > > - I'm not sure at this point who's in charge of my care. Before I ask

> > > the docs, do y'all have suggestions about what an ideal care team

> > > would look like? Thanks again,

> > >

> >

>

>

>

>

>

>

>

> 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]

It is recommended that each of us should have an EKG and

echocardiogram once a year unless a doctor wants it more often. I have

gone ahead and made appts. with specialists before really needing them

to establish a baseline and make sure they will even see me. I have to

have my magnesium, potassium, calcium and phorphorus checked every few

months due to my kidney problems.

I think one of the biggest things a primary doctor (or one who is the

leader of the team) knows that mito can effect all body systems and is

different for each patient and ever changing. I think this helps them

to think in those terms instead of like they do with the " normal "

patient. Have you tried seeing an MDA doc? They are often at least

somewhat knowledgeable about mito as it is one of the diseases covered

by MDA. That way, you can get scripts and often some financial help

with equipment.

Don't get discouraged. It has taken many of us many years to put

together a team.

laurie

>

> Laurie: It is remarkably frustrating to try to get them to talk to

> each other, isn't it?!? And as you said, I'm already walking into

> roadblocks trying to get anyone to take the condition seriously -

> besides Dr. Cohen, who doesn't have time in his schedule to follow

> another adult patient. Both the psychiatric resident who first

> mentioned mito and my primary seem to think this is no big deal

> (despite the life-changing symptoms I'm experiencing) - and that all I

> have to do is take Co Q-10. (see my reply to Shayna). Do I just wait

> for a problem to come up and then ask for a referral to the

> appropriate specialist? Or are there regular screenings I should

> have? I know, for example, that I have developed a heart block and

> arrythmia - I don't feel any worse in that respect than I did a year

> ago, but, given the mitochondrial diagnosis, it would seem prudent to

> me to have EKGs every once in a while to make sure nothing has

> changed. Thanks so much, everybody! I finally feel like I've found

> somebody(s) that it makes sense to talk with.

>

>

>

> > >

> > > I have so many questions for you veterans! My diagnosis was

> confirmed

> > > by Dr. Cohen at the Cleveland Clinic (I know I was lucky to get in to

> > > see him at all), but now it seems that he doesn't have time to follow

> > > my case. The doctor who referred me is a psychiatric intern that I

> > > see for depression/ bipolar symptoms, and I have a " referring

> > > physician " (who seems to do nothing but refer me to

> specialists!). So

> > > - I'm not sure at this point who's in charge of my care. Before

> I ask

> > > the docs, do y'all have suggestions about what an ideal care team

> > > would look like? Thanks again,

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > 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 agree with all Laurie has said about putting together a team of doctors

and getting them to talk to each other. It takes lots of time and patience.

Three years ago I had to move most of my care from specialists at an

academic medical center to a group of local doctors because I couldn't make

the longer trips. The switch was challenging and it has taken all of the

three years to help my local doctors understand my situation and my needs.

We now have a good team in place, doctors who care, who are accessible and

responsive when I need help and who are honest about what they know or don't

know. They respect my experience and knowledge and often defer to me, which

can make all the difference. When your doctors are not experts, you need

someone who really listens and respects your contributions.

Barbara

> Don't get discouraged. It has taken many of us many years to put

> together a team.

>

> laurie

[Guest guest]

Laurie - You are being so helpful! What is " MDA " ? Muscular Dystrophy

.. . . ? I wonder if I could get my primary to refer me to one of

those. I need to see someone about the tremoring anyway. Is there

someplace I can go to get a set of general recommendations for care of

mito patients? Thanks again so much. .

> > > >

> > > > I have so many questions for you veterans! My diagnosis was

> > confirmed

> > > > by Dr. Cohen at the Cleveland Clinic (I know I was lucky to

get in to

> > > > see him at all), but now it seems that he doesn't have time

to follow

> > > > my case. The doctor who referred me is a psychiatric intern

that I

> > > > see for depression/ bipolar symptoms, and I have a " referring

> > > > physician " (who seems to do nothing but refer me to

> > specialists!). So

> > > > - I'm not sure at this point who's in charge of my care. Before

> > I ask

> > > > the docs, do y'all have suggestions about what an ideal care

team

> > > > would look like? Thanks again,

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > 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, Barbara. I guess I have had some bad experiences in the past

trying to influence my own medical care and have gotten gun-shy, but

I'll just have to get over it and step up to the plate again.

>

> I agree with all Laurie has said about putting together a team of

doctors

> and getting them to talk to each other. It takes lots of time and

patience.

> Three years ago I had to move most of my care from specialists at an

> academic medical center to a group of local doctors because I

couldn't make

> the longer trips. The switch was challenging and it has taken all of the

> three years to help my local doctors understand my situation and my

needs.

> We now have a good team in place, doctors who care, who are

accessible and

> responsive when I need help and who are honest about what they know

or don't

> know. They respect my experience and knowledge and often defer to

me, which

> can make all the difference. When your doctors are not experts, you need

> someone who really listens and respects your contributions.

>

> Barbara

>

>

> > Don't get discouraged. It has taken many of us many years to put

> > together a team.

> >

> > laurie

>

[Guest guest]

MDA is Muscular Dystrophy Association. You can go to their website

and they have a list of clinics and locations. You don't

need a referrel (just a call from you) unless your insurance requires

it. The docs are usually neurologists, but not always.

You can go to the UMDF (United Mitochondrial Disease Foundation) at

to find articles. Once you get to the home page, click on

" library " to get to the articles. Let me know privately if you are

having problems getting them.

laurie

>

> Laurie - You are being so helpful! What is " MDA " ? Muscular Dystrophy

> . . . ? I wonder if I could get my primary to refer me to one of

> those. I need to see someone about the tremoring anyway. Is there

> someplace I can go to get a set of general recommendations for care of

> mito patients? Thanks again so much. .

>

>

>

> > > > >

> > > > > I have so many questions for you veterans! My diagnosis was

> > > confirmed

> > > > > by Dr. Cohen at the Cleveland Clinic (I know I was lucky to

> get in to

> > > > > see him at all), but now it seems that he doesn't have time

> to follow

> > > > > my case. The doctor who referred me is a psychiatric intern

> that I

> > > > > see for depression/ bipolar symptoms, and I have a " referring

> > > > > physician " (who seems to do nothing but refer me to

> > > specialists!). So

> > > > > - I'm not sure at this point who's in charge of my care. Before

> > > I ask

> > > > > the docs, do y'all have suggestions about what an ideal care

> team

> > > > > would look like? Thanks again,

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > 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]

Hi ,

Sorry this is late, but I haven't been feeling well (possible line infection).

I can tell you what I did with my doctors and hopefully it will help you with

your doctors.

When I found a doctor that I respected and felt he/she either had the knowledge

of Mito or was interested in learning about Mito, I asked them if they were open

to being part of my " Team " of doctors. If they said Yes, I also asked them if

they were willing to work with my " Team " , and if he/she was willing to

communicate via email. If the answers were all " Yes " then they became a part of

my team.

You will run into some doctors who " feel " that they " know everything " and don't

need any help from other doctors, or that they aren't willing to work with other

doctors.

But if you explain to them that Mito is a very complex disease and it effects

many different organs and that is the reason you need other doctors who are

sub-specialists.

When I have a problem I and I feel that " ALL " of my doctors need to know what is

going on, I email my whole team. They all respond with their thoughts, and

opinions. It is so nice that I have such an outstanding " Team of Doctors " who

are all willing to work together and they are care so compassionately about my

health.

So I am suggesting that when you find a doctor that you like and is willing to

be part of your " Team " of doctors, get their email addresses and work from

there.

I wish you luck.!! I don't know where I would be without my Team of doctors.

Hugs,

Ann-Marie

" Mito Doc " ? Another Question

I have so many questions for you veterans! My diagnosis was confirmed

by Dr. Cohen at the Cleveland Clinic (I know I was lucky to get in to

see him at all), but now it seems that he doesn't have time to follow

my case. The doctor who referred me is a psychiatric intern that I

see for depression/ bipolar symptoms, and I have a " referring

physician " (who seems to do nothing but refer me to specialists!). So

- I'm not sure at this point who's in charge of my care. Before I ask

the docs, do y'all have suggestions about what an ideal care team

would look like? Thanks again,

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]

Wow - I love your approach and will try to follow it - starting with

the movement specialist I see later this month. I'm sorry you haven't

been feeling well - I keep seeing (on this board) comments about a

" line " - what is that? (sorry to be so ignorant.)

>

> Hi ,

>

> Sorry this is late, but I haven't been feeling well (possible line

infection).

>

> I can tell you what I did with my doctors and hopefully it will help

you with your doctors.

>

> When I found a doctor that I respected and felt he/she either had

the knowledge of Mito or was interested in learning about Mito, I

asked them if they were open to being part of my " Team " of doctors. If

they said Yes, I also asked them if they were willing to work with my

" Team " , and if he/she was willing to communicate via email. If the

answers were all " Yes " then they became a part of my team.

>

> You will run into some doctors who " feel " that they " know

everything " and don't need any help from other doctors, or that they

aren't willing to work with other doctors.

>

> But if you explain to them that Mito is a very complex disease and

it effects many different organs and that is the reason you need other

doctors who are sub-specialists.

>

> When I have a problem I and I feel that " ALL " of my doctors need to

know what is going on, I email my whole team. They all respond with

their thoughts, and opinions. It is so nice that I have such an

outstanding " Team of Doctors " who are all willing to work together and

they are care so compassionately about my health.

>

> So I am suggesting that when you find a doctor that you like and is

willing to be part of your " Team " of doctors, get their email

addresses and work from there.

>

> I wish you luck.!! I don't know where I would be without my Team of

doctors.

>

> Hugs,

> Ann-Marie

>

> " Mito Doc " ? Another Question

>

>

> I have so many questions for you veterans! My diagnosis was confirmed

> by Dr. Cohen at the Cleveland Clinic (I know I was lucky to get in to

> see him at all), but now it seems that he doesn't have time to follow

> my case. The doctor who referred me is a psychiatric intern that I

> see for depression/ bipolar symptoms, and I have a " referring

> physician " (who seems to do nothing but refer me to specialists!). So

> - I'm not sure at this point who's in charge of my care. Before I ask

> the docs, do y'all have suggestions about what an ideal care team

> would look like? Thanks again,

>

>

>

>

>

>

>

>

>

> 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]

Hi ,

I hope your appt. with the movement specialist goes well and that he/she will

like to be part of your " team " .

A " Line Infection " is when you have a PICC Line, a Broviac, or a Hickman placed

in your main artery and then they guide it through and it ends up right above

your heart. Lines are used for TPN, extra fluids, IV antibiotics, etc...

I have a Hickman and it was just recently surgerically placed(April26th),

before that I had a PICC line that was placed in my arm. I use my Line for TPN

and extra fluids. If I get an infection it will travel through my body and

create a total mess. I had one when I had my PICC line.

I am sorry if this isn't making sense, I just got back from having my blood

drawn so they can do cultures on it. And I am tired and heading back to bed.

And you are not ignorant, we all were where you are at one time. The way to

learn is to ask questions!!

Best of Luck!!

Hugs,

Ann-Marie

" Mito Doc " ? Another Question

>

>

> I have so many questions for you veterans! My diagnosis was confirmed

> by Dr. Cohen at the Cleveland Clinic (I know I was lucky to get in to

> see him at all), but now it seems that he doesn't have time to follow

> my case. The doctor who referred me is a psychiatric intern that I

> see for depression/ bipolar symptoms, and I have a " referring

> physician " (who seems to do nothing but refer me to specialists!). So

> - I'm not sure at this point who's in charge of my care. Before I ask

> the docs, do y'all have suggestions about what an ideal care team

> would look like? Thanks again,

>

>

>

>

>

>

>

>

>

> 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.

>

>

>

>

>