Re: Friend sent me this, people on oxygen at night (like me) shoul...

[Guest guest]

Hi Mike, If you felt as wretched as I do it would warrant a lot of concern on

your part! (believe me) I have a rare illness called MCS or EI or chemical

injury. My EI list is furious about this.

I don't pay much attention to this article but I do pay amazing amounts of

attention to how I feel! (which doctors rarely do as they have spent their

lives ignoring my symptoms for the most part) I am sure you meant to reassure

me

but I am NOT reassured. I am MAD!

Alice

I'd probably not lose any sleep over this and at your next appointment bring

it up to your doctor. It's an 8 year old study from New Zealand which may or

may not have been reproducible.

It also states with predisposing factors it's a frequency of 0.06 per 1000

patient-years. That may be an increased frequency, but I don't think it

warrants an overly large amount of concern. I'm assuming your doctor

Monitors your liver and kidney functions along the way.

Mike

Click here: CHE Toxicant and Disease Database

[Guest guest]

> I don't pay much attention to this article but I do pay amazing amounts of

> attention to how I feel! (which doctors rarely do as they have spent their

> lives ignoring my symptoms for the most part) I am sure you meant to

> reassure me

> but I am NOT reassured. I am MAD!

Alice, you don't know for sure that the way you feel right now is due to the

metformin, do you? I'm simply saying you should discuss this with your

doctor and not be overly upset about it until you find out more information

from the person who had education and is prescribing your medication. (I'm

sure he or she is quite capable, and has all of your medical history,

right? ... if not see someone else.)

The thing about research papers (like the one you found), is that they state

one persons opinion based upon a finite amount of research. They are

published, and stay around forever... regardless of whether or not any other

study has ever been able to confirm the findings. For all you know, there

have been 50 other studies that have tried to confirm the findings of this

one paper and they have never been able to recreate it.

Talk to your doctor about it... but save the energy on being 'mad' until you

are sure you have something to be mad about. After all there are studies

out there that prove negative emotions are just as harmful to people...

Mike

[Guest guest]

Alice/Mike,

I am going to jump in here right or wrong on my part so I will also add an

advance apology if it is necessary.

I think both of you are right! You seem to be coming from different places

which makes this a bit difficult to put into perspective so I am going to

share a bit for both of you.

I am a 'chronic' patient. I have multiple disabilities and multiple medical

issues which are mostly described as orphan diseases.

I spend hours, days, weeks, months, looking for doctors that are

knowledgeable about my medical issues. That is a full time job and no fun

whatsoever.

I have more or less lucked out with this diabetes thing with the dr I chose.

The first one who my husband is still seeing was not good enough for my

needs so I found the one I am using and am so lucky he is a part of a team

which together with this blessed list I am learning so much to make my own

life better.

For the chronically ill patient, the one who is dependent on doctors for

their prescription pads and licenses to give us medicines, we have to be

very tactful! That goes for the good doctors as well as the not so good

doctors. I happen to be lucky in that I can seek out whatever doctor I want

(until the government changes Medicare I guess, should I live that long????)

so I am not locked into specific doctors as many people are with their

medical insurance and HMOs or whatever.

The fact remains, chronically ill patients simply have to be 'quiet' and

'tactful' and 'cooperative' all of which is defined by the doctor, not the

patient.

Have you ever noticed that the doctors' charts have no place that a patient

can write in any notes? That a doctors' chart is like the bible to ins

companies and some employers etc?

So, I think, not that anyone has asked, that Mike is right in what he is

suggesting, but Alice is right also in her feelings. A person who is sick

with one thing is a very different patient than one who is sick with

mulitiple problems which are not going to resolve.

Off my soap box now, hope I made some sense, and explained a little to

others who are lucky enough not to be in my situation. Now I understand my

elderly relatives saying " at least you have your health " . Never made sense

to me before but it sure does now.

JUDITH

==

(**In view of my response above I am not at all sure how to snip the tails

so I did my best in case anyone wants to know why I wrote what I did...)

Alice wrote:

>

> > I don't pay much attention to this article but I do pay amazing amounts

of

> > attention to how I feel! (which doctors rarely do as they have spent

their

> > lives ignoring my symptoms for the most part) I am sure you meant to

> > reassure me

> > but I am NOT reassured. I am MAD!

>

Mike answered:

>

> Alice, you don't know for sure that the way you feel right now is due to

the

> metformin, do you? I'm simply saying you should discuss this with your

> doctor and not be overly upset about it until you find out more

information

> from the person who had education and is prescribing your medication.

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[Guest guest]

Hi Judith,

My doctor lets me put my own stuff in, I bring in my own notes and

also doctor jokes and relevant articles. I suppose when it get to

big he will let me know. Try bringing your own notes in and asking

them to be put in the chart. I also think legally you are supposed to

read your chart and get copies of everything in it whenever you

want. Donna

Have you ever noticed that the doctors' charts have no place that a

patient

can write in any notes? That a doctors' chart is like the bible to ins

companies and some employers etc?

[Guest guest]

Donna,

what a good idea. I always have questions and notes and research printed

out to discusss with my doctors now that I have ones that I trust. It took

a long time to find them and I'm still checking out the new family practice

dr I'm seeing now.

I've always given a copy of my questions and concerns to my drs but I think

only one of them actually takes it and puts it in my chart.

I just also think there should be a section that the patient can respond to

whatever the dr writes - like " it's all in her head " when it comes to

chronic pain, or a sleep disorder. I've had fibromyalgia since before they

named it and you have no idea how many times I've been referred to a

psychiatrist because the drs don't have answers. It gets really

discouraging sometimes. But life goes on :-)

Drs must give you copies of your chart or let you read it if you request,

but if you ask for copies they have the right to charge you the 'going

price' which is whatever they want. Reading it? For that I think I've

found in the past that there really isn't time for me to do that from

their point of view and " I wouldn't understand it anyway " . Have you ever

noticed when they put you in an examining room they take the chart out and

put it on the door? Supposedly that is so the dr can see it on his/her way

in, but they could see it just as easily in the room. You might get to

look at it!!!!!!

JUDITH

==

> Hi Judith,

> My doctor lets me put my own stuff in, I bring in my own notes and

>

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[Guest guest]

>

> So, I think, not that anyone has asked, that Mike is right in what he is

> suggesting, but Alice is right also in her feelings. A person who is sick

> with one thing is a very different patient than one who is sick with

> mulitiple problems which are not going to resolve.

Judith... I agree.

I'm simply trying to provide a different perspective. Nothing more.

I understand about the multiple medical issues. I have diabetes (of

course), heart issues, arthritis and a couple of other things going on as

well. I treat my internal medicine doctor as the 'referee' so to speak when

it comes to new medicines from the other doctors. My cardiologist may

presecribe something, I discuss all of the other meds I'm taking with him,

but before I start... I make sure my internal medicine doctor agrees. He is

the one I see on a regular basis and he is probably where I would go if a

medicine was making me feel bad...especially if I couldn't pinpoint what the

change was. With about a dozen different meds a day, if something other

than the dosage is altered I run it by him (unless, of course, it's

something I have experience with... but even then, it's discussed with my

internist at the next visit).

I frequently present my doctor with documentation for my chart. He gets a

printed list of my blood sugars for the last 30 days. I also supply him

with a printed list of medications, name, strength and dosage, date started,

prescribing doctor and comments if I think any are the cause of a problem.

I also give him a printed list of my questions/concerns, this way I don't

forget anything as various items get discussed. He also knows that when he

thinks the visit is over, I will take a second to review my list before he

leaves! ;-) (He knows, I'll track him down in the maze of exam rooms and

offices if something was missed!) ;-)

I asked him once if this bothered him. He said absolutely not, because he

knew that this way, when I left the office, I would be doing exactly what he

told me to do medication wise, and that he was confident that I would take

meds correctly and provide him with important information if I experienced

any problems with the meds.

Mike

[Guest guest]

Judith,

I am just responding to your comments here and you make these points so well.

I also have a number of medical problems and getting good medical care is so

difficult. It's difficult for me as the patient and it's difficult for the

doctors who have treated me. I get so overwhelmed by it all just trying to

figure out what needs to be addressed at each visit, what combinations of

things should be brought to the doctor's attention...

How do I know (or how does the doctor know, for that matter) if the pain I

describe in my legs is from neropathy, fibromyalgia, or restless leg syndrome

-- or from something else entirely. Should I talk about my right hip and

shoulder pain or the pain in my left thumb -- probably arthritis on all

accounts, but it's never been diagnosed? Or should I complain about the pain

that's been creeping up in my lower back along with the pain I almost always

have in my upper back, neck and shoulders. Is this resulting from 44 years post

spinal fusions for scoliosis, degenerative discs, fibromyalgia, muscle spasms,

or what?

What about the mild stabbing pain in my chest, or the swelling in my ankles,

and sometimes my asthma gives me difficulty, especially in this Gulf Coast heat

and humidity? And maybe I should talk about how better to control my restless

leg syndrome with a drug that does NOT put me at risk for heart valve damage

(actually, I did convince my doctor that I should have an echocardigram, so

will have that done next week). And how about my diabetes? When are we going to

talk more about that?

I know that stress and depression contribute to problems with my physical

well-being, but that doesn't mean I don't have problems that I need help

working out. I know I am probably a doctor's worst nightmare and I am

embarassed when I have to present my printed list of conditions, medications,

hospitalizations, and surgeries.

I can appreciate the complexity and frustration of dealing with patients like

me, but darnit, they're the professionals, and if they should be doing a better

job at helping us get at our problems. I get so frustrated myself because I

have so many unanswered questions. But when I am in the doctor's office with my

list, I get very distracted trying to carry on a conversation while the doctor

is either writing something in my chart, not really listening to me, or has her

hand on the doorknob to leave the room.

I don't know what the answers are, and I really do try to put myself on the

other side of the table to understand it from the doctor's point of view. I

sometimes wish that I could have a nurse practitioner or physician's assitant

as my PCP, assuming that in those positions they'd have more time to work with

me and help direct which concerns need to be addressed.

I think about this quite a bit -- especially after having had some good

relationships with doctors, but now in this new place having to start all over

again. I want to be a good partner in my own healthcare, but I am overwhelmed

and often directionless.

HELPERDOGS helperdogs2@...> wrote:

I am a 'chronic' patient. I have multiple disabilities and multiple medical

issues which are mostly described as orphan diseases...

... A person who is sick with one thing is a very different patient than one

who is

sick with mulitiple problems which are not going to resolve._,_._,___

__________________________________________________

[Guest guest]

,

Thank you for saying how well I make my points. I've been at it a loooong

time unfortunately.

I think you did a wonderful job of expressing yourself. I have the exact

problems you have adding in a rare/chronic leukemia with all its secondary

issues, so I know exactly what you are saying and feeling. There doesn't

seem to be an answer.

Just how do you discuss all we need to discuss with a doctor in 15

minutes?!

hang in there. We are survivors, aren't we?!

JUDITH

====

> Judith,

>

> I am just responding to your comments here and you make these points so

well.

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[Guest guest]

Judith,

Who gets 15 minutes with their doctor? ;-) I'm doing well to get more than 5.

HELPERDOGS helperdogs2@...> wrote:

Just how do you discuss all we need to discuss with a doctor in 15

minutes?!

_,_._,___

__________________________________________________

[Guest guest]

I actually get the time I need with my dr. I make sure I have a list

ready of all my questions/concerns. I have spent anywhere from 10-50

minutes with my dr. She will sit there until she is sure all my

questions are answered. I love my dr, she doesnt just come in, say hi,

how are you, do this and take this med and then leave. I do undrstand

she is busy though so I do try to be prepared.

> Judith,

>

> Who gets 15 minutes with their doctor? ;-) I'm doing well to get more than

5.

>

>

-

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[Guest guest]

,

5 minutes? What can you say besides hello and goodbye? I'd be looking for

another dr. 15 minutes isn't enough, forget 5!

JUDITH

> Who gets 15 minutes with their doctor? ;-) I'm doing well to get more

than 5.

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[Guest guest]

Judith,

I am in the process of finding a new doctor now. I have a couple of

possibilites -- just have to find one who takes traditional Medicare.

HELPERDOGS helperdogs2@...> wrote:

,

5 minutes? What can you say besides hello and goodbye? I'd be looking for

another dr. 15 minutes isn't enough, forget 5!

JUDITH

__________________________________________________