Nsg's in New England/Symptoms Dismissed/Advice Needed

[Guest guest]

Well.. it's been three to four weeks with this constant lower back and nerve

pain -- and things do not seem to be improving. My D.O. prescribed Celebrex but

that did nothing -- so I am now on Norflex. I am one of those people who has a

very high threshold for pain -- and find myself " getting used to it " -- can

others relate?

I also find myself frustrated with the medical community at large for their

lack of knowledge regarding TCS -- it is indeed a rare disorder -- and I once

again find myself frustrated at having to " explain " myself. I am almost tempted

to write up a history sheet and just give it to the nurse when going to

appointments. Have any of you done this?

I also find myself playing the " waiting game " with my insurance to get an MRI

authorized -- they denied the first request -- and so now my doctor has to

conference with their doctor to petition Anthem to cover it. So, this leaves me

still in much pain.. still with the left leg numbness and shooting pain up my

spine and down my leg.

Seriously though if I HAD NOT called my doctor's office last Tuesday (a week

to the date of my first appointment) I wouldn't have known about having to wait

-- or anything for that matter. It's been a while since I've been back in the

" pinball machine " bouncing back and forth -- I haven't seen or followed up with

any Nsg. since 2001 when I went to see Dr. Long in Omaha -- who by the way

happened to be a complete egotistical prick -- who dismissed all my symptoms --

dismissed me -- did not even read my chart -- and then told me there was nothing

he could do for me -- that this was ALL just in my head. Pretty much accused

me of " crying wolf " and I should come back when I had " real " symptoms. He did

not want to " waste his time " with me. Argh.

I lost my faith in the medical community after that -- it really burned me --

As my D.O. now says it's time to " get back on track " and see what can be done.

Any advice or similar experiences? Who do people see in the New England area?

I live in Southern Maine but am close to Boston. I've always otherwise been

treated by Nsg's in the Boston Area -- I am not opposed to being treated by

others in Portsmouth or Portland -- I just wonder about their experience with

TCS. Any recommendations? Any advice would be greatly appreciated. Thank You.

Warmly,

" May the sun bring you new energy by day may the moon softly restore you by

night, may the rain wash away your worries, may the breeze blow new strength

into your being, may you walk gently through the world and know its beauty all

the days of your life. "

- Apache Blessing

" When you arise in the morning, think of what a privilege it is to be alive to

breathe, to think, to enjoy, to love. "

- Marcus Aurelius

---------------------------------

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[Guest guest]

Hi

Where in Southern Maine are you? I just moved from Alfred, having lived there

for over 20 years. I had absolutely wonderful doctors and would be happy to

help if you I can.

Kathy (PS - Write me off-list if interested.)

Nsg's in New England/Symptoms Dismissed/Advice Needed

Well.. it's been three to four weeks with this constant lower back and nerve

pain -- and things do not seem to be improving. My D.O. prescribed Celebrex but

that did nothing -- so I am now on Norflex. I am one of those people who has a

very high threshold for pain -- and find myself " getting used to it " -- can

others relate?

I also find myself frustrated with the medical community at large for their

lack of knowledge regarding TCS -- it is indeed a rare disorder -- and I once

again find myself frustrated at having to " explain " myself. I am almost tempted

to write up a history sheet and just give it to the nurse when going to

appointments. Have any of you done this?

I also find myself playing the " waiting game " with my insurance to get an MRI

authorized -- they denied the first request -- and so now my doctor has to

conference with their doctor to petition Anthem to cover it. So, this leaves me

still in much pain.. still with the left leg numbness and shooting pain up my

spine and down my leg.

Seriously though if I HAD NOT called my doctor's office last Tuesday (a week

to the date of my first appointment) I wouldn't have known about having to wait

-- or anything for that matter. It's been a while since I've been back in the

" pinball machine " bouncing back and forth -- I haven't seen or followed up with

any Nsg. since 2001 when I went to see Dr. Long in Omaha -- who by the way

happened to be a complete egotistical prick -- who dismissed all my symptoms --

dismissed me -- did not even read my chart -- and then told me there was nothing

he could do for me -- that this was ALL just in my head. Pretty much accused me

of " crying wolf " and I should come back when I had " real " symptoms. He did not

want to " waste his time " with me. Argh.

I lost my faith in the medical community after that -- it really burned me --

As my D.O. now says it's time to " get back on track " and see what can be done.

Any advice or similar experiences? Who do people see in the New England area?

I live in Southern Maine but am close to Boston. I've always otherwise been

treated by Nsg's in the Boston Area -- I am not opposed to being treated by

others in Portsmouth or Portland -- I just wonder about their experience with

TCS. Any recommendations? Any advice would be greatly appreciated. Thank You.

Warmly,

" May the sun bring you new energy by day may the moon softly restore you by

night, may the rain wash away your worries, may the breeze blow new strength

into your being, may you walk gently through the world and know its beauty all

the days of your life. "

- Apache Blessing

" When you arise in the morning, think of what a privilege it is to be alive to

breathe, to think, to enjoy, to love. "

- Marcus Aurelius

---------------------------------

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

>hi erin, i don't know how close you are to springfield, ma. but

there is a wonderful ns at baystate medical center in springfield. he

was my ns for many yrs. back in the 90's but moved to ma. if you are

able to get there i would tell you to see him, his hame is paul m.

kanev m.d. good luck. beth

> Well.. it's been three to four weeks with this constant lower back

and nerve pain -- and things do not seem to be improving. My D.O.

prescribed Celebrex but that did nothing -- so I am now on Norflex.

I am one of those people who has a very high threshold for pain --

and find myself " getting used to it " -- can others relate?

>

> I also find myself frustrated with the medical community at large

for their lack of knowledge regarding TCS -- it is indeed a rare

disorder -- and I once again find myself frustrated at having

to " explain " myself. I am almost tempted to write up a history sheet

and just give it to the nurse when going to appointments. Have any

of you done this?

>

> I also find myself playing the " waiting game " with my insurance

to get an MRI authorized -- they denied the first request -- and so

now my doctor has to conference with their doctor to petition Anthem

to cover it. So, this leaves me still in much pain.. still with the

left leg numbness and shooting pain up my spine and down my leg.

>

> Seriously though if I HAD NOT called my doctor's office last

Tuesday (a week to the date of my first appointment) I wouldn't have

known about having to wait -- or anything for that matter. It's been

a while since I've been back in the " pinball machine " bouncing back

and forth -- I haven't seen or followed up with any Nsg. since 2001

when I went to see Dr. Long in Omaha -- who by the way happened to be

a complete egotistical prick -- who dismissed all my symptoms --

dismissed me -- did not even read my chart -- and then told me there

was nothing he could do for me -- that this was ALL just in my head.

Pretty much accused me of " crying wolf " and I should come back when

I had " real " symptoms. He did not want to " waste his time " with me.

Argh.

>

> I lost my faith in the medical community after that -- it really

burned me -- As my D.O. now says it's time to " get back on track " and

see what can be done.

>

> Any advice or similar experiences? Who do people see in the New

England area? I live in Southern Maine but am close to Boston. I've

always otherwise been treated by Nsg's in the Boston Area -- I am not

opposed to being treated by others in Portsmouth or Portland -- I

just wonder about their experience with TCS. Any recommendations?

Any advice would be greatly appreciated. Thank You.

>

>

> Warmly,

>

>

>

>

> " May the sun bring you new energy by day may the moon softly

restore you by night, may the rain wash away your worries, may the

breeze blow new strength into your being, may you walk gently through

the world and know its beauty all the days of your life. "

>

> - Apache Blessing

>

> " When you arise in the morning, think of what a privilege it is to

be alive to breathe, to think, to enjoy, to love. "

>

> - Marcus Aurelius

>

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

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

>

[Guest guest]

Maher said the following on 7/24/2006 7:54 AM:

> I also find myself frustrated with the medical community at large for their

lack of knowledge regarding TCS -- it is indeed a rare disorder -- and I once

again find myself frustrated at having to " explain " myself. I am almost tempted

to write up a history sheet and just give it to the nurse when going to

appointments. Have any of you done this?

yes, saves a lot of time and trying to remember everything relevant,

also include your past and present meds