on topic of docvisits..

[Guest guest]

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