Re: on topic of docvisits..

[Guest guest]

Very wise, Alice. Thanks for sharing.

Barbara

> OK..I think some of us are misinterpreting what has been said.

Each doctor that I see is informed per my records that I have a form

of Muscular Dystrophy. If they ask me more, I share it but I'm

careful to try not to overwhelm them. The file that is brought in

at my PCP here (remember that I'm somewhat new to NM) is the second

one because the first is so thick they had to store it and start a

new one. You can tell which doctors are interested and which are

not. For example - I've only seen the pulmononlogist twice with a

third visit in a couple of weeks - and every time he looks at my

thin file and looks at me there's a puzzled look on his face which

is almost a scowl. He's the only pulmo I can see so I don't

overload him with information as it's obvious that he can't handle

it. Alternately, the neuro opthamolgist took a complete interest in

me from the day he saw me and he gets into things in depth. In

fact, he has ordered tests that are specific for Mito patients. His

office visits can be three hours if he decides that and my first

visit with him was three and the second was one. The

otolaryngologist (CI Surgeon) flat tells me he doesn't know anything

about mito. We don't go there as he doesn't want to. It's not his

area of expertise. My brand new endocrinologist is somewhat

familiar with Mito - gave me an hour at my first visit and ordered

some necessary tests - took the information on Diabetes and the

Mitochondria stating she was really glad to get it and that she

wanted to read it. She was inquisitive and asked questions that

told me that she wanted to learn (and this is the best kind of

doctor in my opinion) and she's following up with a return visit

this coming Tuesday. The MDA neuro admits he does not know much

about Mito, has 10 patients with it, and we just treat as we go.

This is the only neuro I can be referred to as he's the only one in

the area who is familiar with MD. In my case, it's hard not to

appear as a complex patient when I arrive in a power chair and need

assistance to understand because of the deafness and the visual

issues.

>

> I've realized that I have to feel each situation out and determine

whether we have a doctor who is able to handle this because it's

really difficult as we all know. The key for me has been finding a

very good primary care doctor who never fails to take the time I

need and does want to learn but is also very helpful in getting me

to the right people when needed.

>

> Alice

>

>

[Guest guest]

---

Thanks for sharing this with us Alice! HugsDawnA

In , " A

ADAMS " wrote:

> OK..I think some of us are misinterpreting what has been said.

Each doctor that I see is informed per my records that I have a form

of Muscular Dystrophy. If they ask me more, I share it but I'm

careful to try not to overwhelm them. The file that is brought in

at my PCP here (remember that I'm somewhat new to NM) is the second

one because the first is so thick they had to store it and start a

new one. You can tell which doctors are interested and which are

not. For example - I've only seen the pulmononlogist twice with a

third visit in a couple of weeks - and every time he looks at my

thin file and looks at me there's a puzzled look on his face which

is almost a scowl. He's the only pulmo I can see so I don't

overload him with information as it's obvious that he can't handle

it. Alternately, the neuro opthamolgist took a complete interest in

me from the day he saw me and he gets into things in depth. In

fact, he has ordered tests that are specific for Mito patients. His

office visits can be three hours if he decides that and my first

visit with him was three and the second was one. The

otolaryngologist (CI Surgeon) flat tells me he doesn't know anything

about mito. We don't go there as he doesn't want to. It's not his

area of expertise. My brand new endocrinologist is somewhat

familiar with Mito - gave me an hour at my first visit and ordered

some necessary tests - took the information on Diabetes and the

Mitochondria stating she was really glad to get it and that she

wanted to read it. She was inquisitive and asked questions that

told me that she wanted to learn (and this is the best kind of

doctor in my opinion) and she's following up with a return visit

this coming Tuesday. The MDA neuro admits he does not know much

about Mito, has 10 patients with it, and we just treat as we go.

This is the only neuro I can be referred to as he's the only one in

the area who is familiar with MD. In my case, it's hard not to

appear as a complex patient when I arrive in a power chair and need

assistance to understand because of the deafness and the visual

issues.

>

> I've realized that I have to feel each situation out and determine

whether we have a doctor who is able to handle this because it's

really difficult as we all know. The key for me has been finding a

very good primary care doctor who never fails to take the time I

need and does want to learn but is also very helpful in getting me

to the right people when needed.

>

> Alice

>

>

[Guest guest]

Very good summary Alice. After I was diagnosed in 1997 after my sisters

diagnosis by the doc in milwaukee, I went searching for a primary care doc

because we live two hours away. My " family physician " at a local clinic took

one look at the notes that I had gotten and said he did not want to work with

him. He is also the one who would not take the time two years ago to find out

why my son was having a stomach ache--took him to his regular gp and she xrayed

and she said he was so consstipated he could have died.

Enough of that--I went about trying to find someone who would take our insurance

and ran into two other who did not want to take me as a patient but these were

not as arrogant as the other, they just admitted that they did not have the

expertise and could not give good service.

I was lucky to find my current gp who I have been seeing since 1998. She did

not know alot about mito but looked up some info on it. She is willing to say

she does not know. She now knows alot about it so when I go there for a visit

the focus is on the current problem.

I recently went to see a new doctor to discuss birth control as well as the rn

who is helping with the insulin pump. In each case I told them I had a rare

mitochondrial disease and just told them about what they needed to know such as

certain kinds of birth control are on the list for mito's not to take, and that

my blood sugar goes up when I exercise.

I was lucky in each case that each asked for more info on the disease and seemed

generally interested. I just basically said that it affects each person in

different ways and that there are children and adults with mild symptoms to

having to be in wheel chairs and cannot breathe without extra oxygen. I then

gave them the umdf website.

Janet Sample

on topic of docvisits..

>

> OK..I think some of us are misinterpreting what has been said. Each doctor

that I see is informed per my records that I have a form of Muscular Dystrophy.

If they ask me more, I share it but I'm careful to try not to overwhelm them.

The file that is brought in at my PCP here (remember that I'm somewhat new to

NM) is the second one because the first is so thick they had to store it and

start a new one. You can tell which doctors are interested and which are not.

For example - I've only seen the pulmononlogist twice with a third visit in a

couple of weeks - and every time he looks at my thin file and looks at me

there's a puzzled look on his face which is almost a scowl. He's the only pulmo

I can see so I don't overload him with information as it's obvious that he can't

handle it. Alternately, the neuro opthamolgist took a complete interest in me

from the day he saw me and he gets into things in depth. In fact, he has

ordered tests that are specific for Mito patients. His office visits can be

three hours if he decides that and my first visit with him was three and the

second was one. The otolaryngologist (CI Surgeon) flat tells me he doesn't

know anything about mito. We don't go there as he doesn't want to. It's not his

area of expertise. My brand new endocrinologist is somewhat familiar with Mito

- gave me an hour at my first visit and ordered some necessary tests - took the

information on Diabetes and the Mitochondria stating she was really glad to get

it and that she wanted to read it. She was inquisitive and asked questions that

told me that she wanted to learn (and this is the best kind of doctor in my

opinion) and she's following up with a return visit this coming Tuesday. The

MDA neuro admits he does not know much about Mito, has 10 patients with it, and

we just treat as we go. This is the only neuro I can be referred to as he's the

only one in the area who is familiar with MD. In my case, it's hard not to

appear as a complex patient when I arrive in a power chair and need assistance

to understand because of the deafness and the visual issues.

>

> I've realized that I have to feel each situation out and determine whether we

have a doctor who is able to handle this because it's really difficult as we all

know. The key for me has been finding a very good primary care doctor who never

fails to take the time I need and does want to learn but is also very helpful in

getting me to the right people when needed.

>

> Alice

>

>