brush-off by docs LONG

[Guest guest]

Regarding brush-offs by doctors, that's all I've EVER received (last few

years, re mito). Some of them bounce me to someone else, with a hopeless

glazed look and some helpful words " Good luck, I hope this doctor can help

you " . Others keep me on, in a bounced state, which I guess is worse. I would

try to change doctors, but I wrestle with keeping some continuity (and

getting a bit tired of spending an entire long appointment educating the doc

on mito, instead of getting what I actually need). My SSDI application

efforts have taught me that numerous venues put considerable value on " How

long have you been seeing this doctor on a regular basis? " and especially

that impossible Holy-Grail letter from a doc: " Here's my diagnosis and

here's the reported symptoms and test results that support this opinion " .

I've tried not to post here lately, because my experience has been SO vastly

different from so many here, that all I do is get frustrated and

long-windedly vent, which I know is tiresome to read. And I'm SO exhausted

that even words of encouragement to " keep going " sound like much more hard

work than I can handle. Seems every step I take to get some small SSDI

income, or some free or subsidized health care, or even some new and better

doc, inevitably turns to " Here's yet another 800-page form that we'll need

you to fill out. " Even my newly-hired disability attorney did the same,

though I specifically explained that I'm looking for HELP with all of this.

I suppose I can't blame her, or any of these parties, because they each DO

need this info. I keep my records in decent organization, and TRY my hardest

to get copies of everything (despite frequent resistance from docs and their

staff). But for me, it's very wearying just to keep track of WHICH agency

has seen WHICH test result, as the whole thing keeps rolling on,

occasionally generating new test results but little else.

My latest brush-off:

To recap, back in November I FINALLY after many delays had my blood drawn at

Mass General Hospital, for a DNA mito mutation blood test. After three

months (two to complete the test, and one to play footsie with releases), I

noticed that they had done the wrong test (at infamous Athena Diagnostics).

So a re-test was ordered. They weren't supposed to re-use the now very old

blood, but they did anyway. So recently the test results finally came in. I

made an appointment for last Thursday, to go in to see my (already very

elusive) doc at MGH. Because he was away when I made the appointment, and

was going away again soon, they had to " squeeze me in " at 5 PM.

So I get there at 5:05 PM (there was extra traffic, took me more than two

hours to get there), only to find I'm at his other office, but they will

call ahead for me. So I get to the right place at 5:10 PM. There's no one at

the reception desk, but a few other patients, so I sit down to wait. After

about an hour the remaining patients empty out, but there's still some

activity, apparently an occasional doc going by, so we wait some more.

Finally I go walking into the office suite looking for ANYONE. One doctor

told me that my doc was probably still there, because he thinks he saw him.

Some more time goes by, and eventually at 6:45 PM another doc tells us that

my doc isn't there. Swell. So I have left messages on the phone, but there's

nothing else to do but leave ($7 lighter, for the parking).

Just by the way, my wife and I were going to meet our college daughter for

our favorite Thai food later, in Boston. Instead, we were able to catch

sight of her (on bicycle) in city streets, and by waving at her, cause a

pile-up that sent her to (another hospital's) ER to be patched up. Then when

we got home, I found that our cable TV had been cut back from $45 Enhanced

Basic (which I watch lots, during the night when I never sleep until 6 AM)

to $11 Basic. We'd been getting the enhancement for free because the system

is old, so I shouldn't complain, but we can't afford another $34 per month

now.

Next day, I got a VERY condescending call from the doctor's staff,

mis-understanding a very clear message that I HAD been there very shortly

after the right time. They somehow thought I had shown up at the time of my

FIRST call, at 6:20PM (I didn't call earlier, because I knew I would only

get an answering machine, which in fact did happen). They said my doc was

there until 5:30PM; if true, then he certainly didn't look into the waiting

room, no one left a note for me, and he must have sneaked out another exit.

I also found out that this doc was now in Turkey, and would not return until

the end of May, a month from now.

And all I was looking for, was to finally see these DNA results. And also I

was going to ask for some referrals (to try to get off this particular merry

go round). Now THAT is on hold too. By the way, I now finally understand

that this doc is part of Neurology Associates at MGH, which also includes

some docs mentioned (such as Sims) in this email list. This is not very

encouraging, because I suspect that I won't be changing amusement rides

after all. And for now, all I have is free care at MGH, so I'm sort of

stuck.

Sorry for the length, I'll go back into hibernation now.

Steve D.

> Date: Fri, 29 Apr 2005 11:47:53 -0400

>

> Subject: Management of multiple doctors

>

> It is a real shame that not all doctors are able to work together as my

sons one doctor of 8 years has for some odd reason just written him off. He

stopped ordering all his monthly IV in home hydration which was his idea to

start in the first place. Though my son is 19 years old, I know it makes him

feel bad as he trusted this doctor. I personally think he could not or did

not want to work with other doctors out of his hospital/ network all the

other doctors seem to be working well with each other. I don't think that

they should be allowed to write patients off like this without calling them

and giving a good reason. I guess they forget the oath they took to help

their patients when they became a doctor. Sorry I needed to vent and I am

happy someone finally brought up this subject.

> Hugs,

> Donna K