Re: re: For :)

[Guest guest]

First off.... thank you for writing back and sharing some of your

experiences and lending advice... it is greatly appreciated. Yes, in fact I ran

into a good friend at lunch today -- and b/c she's someone I trust.. the next

time I see her I'm going to ask her about her recommendations etc. She is a

doctor herself but does not practice in this area. She and her partner are

wonderful people.. both of whom I greatly admire.. so thank you for listening

and affirming my concerns.. it means a lot.

That and my naturopath called me back today so perhaps I can ask her as well.

Sometimes it helps asking other people doesn't it... because you've helped me

see what was in front of me.. but just perhaps didn't notice. Hoping this finds

you well.... The weather here was soooooo warm and spring like today... made

a real difference in my mood. Hoping the flowers are growing near you....

Weaver wrote:

,

I had a great PCP. He didn't know a lot about TCS

when I first saw him, but he learned and was willing

to listen to me and do the research to find out what

he needed to know. That meant a lot. He left the

practice and I got the doctor you're talking about

below. I asked him to prescribe me an anticonvulsant

for my leg pain. He honest to goodness looked at me

and said " I've never prescribed one of them before. "

WHAT??? I started calling him Doogie after that. He

was just such a bad doctor. I went to him (for the

last time), and he said right away " I'm not giving you

pain pills. " Not only did I never ask him for pain

pills, I've refused the vast majority of pain pills

the doctors have attempted to prescribe over the

years, and that is in my chart. I finally told him

that I wasn't asking for pain meds, that I wanted to

know if something else was wrong with me that had

nothing to do with my back (the pain doc thought it

might be rheumatoid arthritis), and that I was finding

a doctor who didn't automatically suspect I was drug

shopping before I finished my f***ing sentence. And I

walked out. I now have a doctor who is WONDERFUL, but

I really lucked out. I asked around and he was the one

name that many people told me about.

You need to talk to anyone you can around you. It's

tough to find a primary doc who knows a lot about TCS,

but you can find a doc who is willing to research and

learn and do what you ask him to do. I found that to

be much more important than having a doctor who is a

know-it-all and won't listen to me at all.

Good luck!!

--- Maher wrote:

> I'm not sure who wrote back to my intro reply about

> the battle in finding knowledgable primary care

> physicians... but yes, my question is how does one

> go about this? how have you gone through this

> process? When I was younger and in my early teens I

> was fortunate enough to have a doctor who was just

> that... knowledgable, caring with excellent " bed

> side manner " -- old fashioned in sorts because he

> took the time to really listen to your concerns.

> Ever since I've moved I haven't ever had that luck

> again with primary care doctors.. I'm in this

> position now.

>

> I've hidden behind this wall of frustration long

> enough. It really hasn't gotten me anywhere. Yes,

> trust is a BIG issue with me. I like many people

> here, I imagine have run across the " deer in

> headlights " look from doctors .... " like.. huh? what

> exactly is this condition? you have a problem? sorry

> but I've never heard of this before " It's often been

> ME educating them.

>

> I'm not sure where to start this time... I'm really

> not. Wish I lived in a more familiar area... it was

> comforting living in a small town growing up.. where

> everyone knew everyone else. The net is a

> beginning.. but this entire prospect completely

> overwhelms me... to the point of me feeling like I'm

> sinking ... sinking from the depression/anxiety.

>

>

>

>

> Warmly,

>

>

>

> " Let yourself be silently drawn by the stronger pull

> of what you really love. "

>

> - Rumi

>

> " We attract hearts by the qualities we display; we

> retain them by the qualities we possess. "

>

> - Baptiste Antoine Suard

> French Journalist

>

> ---------------------------------

> Yahoo! Mail

> Stay connected, organized, and protected. Take the

> tour

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

This is one of the weirdest disorders. Most people

have no clue that it exists. If we can't help each

other, I think we'd be lost. I know the list that we

developed from was instrumental in helping me keep my

sanity.

You are more than welcome, and good luck finding a

doctor that fits you!

--- Maher wrote:

> First off.... thank you for writing back

> and sharing some of your experiences and lending

> advice... it is greatly appreciated. Yes, in fact I

> ran into a good friend at lunch today -- and b/c

> she's someone I trust.. the next time I see her I'm

> going to ask her about her recommendations etc. She

> is a doctor herself but does not practice in this

> area. She and her partner are wonderful

> people.. both of whom I greatly admire.. so thank

> you for listening and affirming my concerns.. it

> means a lot.

>

> That and my naturopath called me back today so

> perhaps I can ask her as well. Sometimes it helps

> asking other people doesn't it... because you've

> helped me see what was in front of me.. but just

> perhaps didn't notice. Hoping this finds you

> well.... The weather here was soooooo warm and

> spring like today... made a real difference in my

> mood. Hoping the flowers are growing near you....

>

>

> Weaver wrote:

> ,

>

> I had a great PCP. He didn't know a lot about TCS

> when I first saw him, but he learned and was willing

> to listen to me and do the research to find out what

> he needed to know. That meant a lot. He left the

> practice and I got the doctor you're talking about

> below. I asked him to prescribe me an

> anticonvulsant

> for my leg pain. He honest to goodness looked at me

> and said " I've never prescribed one of them before. "

>

> WHAT??? I started calling him Doogie after that.

> He

> was just such a bad doctor. I went to him (for the

> last time), and he said right away " I'm not giving

> you

> pain pills. " Not only did I never ask him for pain

> pills, I've refused the vast majority of pain pills

> the doctors have attempted to prescribe over the

> years, and that is in my chart. I finally told him

> that I wasn't asking for pain meds, that I wanted to

> know if something else was wrong with me that had

> nothing to do with my back (the pain doc thought it

> might be rheumatoid arthritis), and that I was

> finding

> a doctor who didn't automatically suspect I was drug

> shopping before I finished my f***ing sentence. And

> I

> walked out. I now have a doctor who is WONDERFUL,

> but

> I really lucked out. I asked around and he was the

> one

> name that many people told me about.

>

> You need to talk to anyone you can around you. It's

> tough to find a primary doc who knows a lot about

> TCS,

> but you can find a doc who is willing to research

> and

> learn and do what you ask him to do. I found that

> to

> be much more important than having a doctor who is a

> know-it-all and won't listen to me at all.

>

> Good luck!!

>

>

>

>

>

> --- Maher wrote:

> > I'm not sure who wrote back to my intro reply

> about

> > the battle in finding knowledgable primary care

> > physicians... but yes, my question is how does one

> > go about this? how have you gone through this

> > process? When I was younger and in my early teens

> I

> > was fortunate enough to have a doctor who was just

> > that... knowledgable, caring with excellent " bed

> > side manner " -- old fashioned in sorts because he

> > took the time to really listen to your concerns.

> > Ever since I've moved I haven't ever had that luck

> > again with primary care doctors.. I'm in this

> > position now.

> >

> > I've hidden behind this wall of frustration long

> > enough. It really hasn't gotten me anywhere.

> Yes,

> > trust is a BIG issue with me. I like many people

> > here, I imagine have run across the " deer in

> > headlights " look from doctors .... " like.. huh?

> what

> > exactly is this condition? you have a problem?

> sorry

> > but I've never heard of this before " It's often

> been

> > ME educating them.

> >

> > I'm not sure where to start this time... I'm

> really

> > not. Wish I lived in a more familiar area... it

> was

> > comforting living in a small town growing up..

> where

> > everyone knew everyone else. The net is a

> > beginning.. but this entire prospect completely

> > overwhelms me... to the point of me feeling like

> I'm

> > sinking ... sinking from the depression/anxiety.

> >

> >

> >

> >

> > Warmly,

> >

> >

> >

> > " Let yourself be silently drawn by the stronger

> pull

> > of what you really love. "

> >

> > - Rumi

> >

> > " We attract hearts by the qualities we display; we

> > retain them by the qualities we possess. "

> >

> > - Baptiste Antoine Suard

> > French Journalist

> >

> > ---------------------------------

> > Yahoo! Mail

> > Stay connected, organized, and protected. Take

> the

> > tour

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> __________________________________________________

>