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Hello,

This is . I live in Murray, Kentucky and go to The Pain Management

Center of Paducah. The Dr. is Laximiah Manchikanti, an anesthesiologist.

Anything anyone can tell me would be greatly appreciated.

Can't type well. I'll have more to say at another time.

Thanks to all,

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In a message dated 5/10/00 7:49:22 PM Eastern Daylight Time,

paulaakajane@... writes:

<< Anything anyone can tell me would be greatly appreciated.

Can't type well. >>

Hi ,

I cannot type well either, first because I can't type, Lol, but at times my

hand is get pretty bad.

As far as telling you something I can only share my experiences as far as

treatments and medications. I can also share my research. If you go to the

main site page of this list you will see the link button on the left. We have

added quite a few very informative links.

If you would take a minute a go to it, while there you can go to the database

is making or the files section and add a photo. You will be there all

day. Lol

To hold you over I am enclosing a link to 30 pages of the best RSD info for

the layman I have come across.

I chose to print it out. I brought a copy to my doctor and sent one to my

lawyer.

I am going to the pain clinic tomorrow to see my anesthesiologist for a

lidocaine IV.

This is done once a month, followed with a daily dosage of Mexitil the oral

form of lidocaine. It seems to have made the seizure type episodes stop, and

eased quite a bit of the burning.

Judy, a nurse who is also on this list, had an adverse reaction to it. Like

anything else, everyone is different. I also take oxycontin and hydrocodone.

Oh and neurontin.

Hope this link proves useful. Welcome .

<A HREF= " http://www.rsds.org/ " >RSDSA - Reflex Sympathetic Dystrophy Syndrome

Association of America Homepage</A>

or

www.rsds.org

Hugs and a pain free moment,

Deb

listowner

crps@egroups

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,

Hi! My name is Tracey and I just wanted to welcome you to the group. I

have RSD in my whole left side after knee surgery in 1997. It just keeps

spreading on me. Please know we all care here and are always here to

listen and share. Welcome!!

Hugs, Tracey

> [Original Message]

>

> To: <CRPSegroups>

> Date: 5/10/00 7:48:22 PM

> Subject: Re: rsd Re: a and

>

> Hello,

>

> This is . I live in Murray, Kentucky and go to The Pain Management

> Center of Paducah. The Dr. is Laximiah Manchikanti, an anesthesiologist.

> Anything anyone can tell me would be greatly appreciated.

>

> Can't type well. I'll have more to say at another time.

>

> Thanks to all,

>

>

>

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

> Would you like to save big on your phone bill -- and keep on saving

> more each month? Join beMANY! Our huge buying group gives you Long

Distance

> rates which fall monthly, plus an extra $60 in FREE calls!

> http://click./1/2567/0/_/706883/_/958002500/

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

>

>

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Hi PJ and All,

a here. We want to thank everyone for their help, concern & info.

has had such a hard time with this. Not only is he dealing with a Dr. that

doesn't prescribe any other pain relief, but goes through the usual mess with

family & friends who do not understand & think he is " faking it " (imagine

that!). I keep telling him that I think his Dr. is not treating this

properly, yet he doesn't want to upset anyone by asking for drugs and such. I

told him he had the right to read his medical records to find out what was

being said regarding his condition since the Dr. rarely has much to say at

all other than treating him & herding him out (the guy does over 3000 nerve

blocks like 's every year!). When he picked up his chart to read it,

the nurse took it away & said he didn't need to see it. WHAT? If anyone knows

of a neurologist in the Nashville, TN area, that would be great. I have asked

to make an appointment with my rheumatologist so he can get a

referral for another Dr. (I have mentioned 's RSD to my Dr. & he

seemed to know a whole lot more about it than anyone else has), bone scan,

etc., since the anesthesiologist doesn't work with anyone else regarding the

treatment of the RSD. I love & will NOT sit by & watch him suffer. I

don't care how far we have to travel to find the right Dr., we will find one

that will work with him to ease the pain. Thanks again to everyone for being

here for us.

Hugs & Love to All,

a

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Hi PJ here:

I have been riding the back of this monster since " 91 " .The information on

this disease is getting better everday.Your options of treatment are varied

as the understanding of RSD by your DR will be the driving factor in your

treatment!

The most important thing that I can relate to you is that RSD and its

symptoms cannot be sterotyped the disease is differant for all of us.This is

the main reason it is hard to find a good treating DR.They see 1 case and

think they have all the answers,they will make you think that anything

outside their experiance is in your head!!!!You are litteraly going to war

with your own body,the attacks are as unique as you are.You are not going

crazy and it is not in your head!!!!!

As you go through this nightmare remember you are not alone.Read all you can

find and keep a journal so you can keep track of the changes which are

taking place in your body.I pray that the treatment you recieve will control

the pain and spread of this disease.

Your Friend in Pain

PJ

- Re: rsd Re: a and

Hello,

This is . I live in Murray, Kentucky and go to The Pain Management

Center of Paducah. The Dr. is Laximiah Manchikanti, an anesthesiologist.

Anything anyone can tell me would be greatly appreciated.

Can't type well. I'll have more to say at another time.

Thanks to all,

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

Would you like to save big on your phone bill -- and keep on saving

more each month? Join beMANY! Our huge buying group gives you Long Distance

rates which fall monthly, plus an extra $60 in FREE calls!

http://click./1/2567/0/_/706883/_/958002500/

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

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Hi a!

I think that you've started on the right path trying to get the

treatment he needs. You must try and convince him that he does have the

right to read his medical records, participate in his own treatment

decisions, be as pain-free as humanly possible with RSD, etc.

I think, and the rest of the list will correct me if I'm wrong :-))

that most pain mgmt. Drs. want to be the only ones to treat the RSD. My pain

Dr. WILL work in conjunction with any of my other Drs. but will not share the

treatment of the RSD. He has a firm plan in his mind, and if I start adding

other treatments for the pain, he doesn't know what's effective and what

isn't. He has no interest in whatever other ailments I have, he wants my

primary to worry about those.

There will always be people who think that those of us with RSD are " faking "

it. I don't know how to tell people that if I would not wish this upon

ANYONE. A lot of us look like " normal " people so others assume that we feel

like normal people.

There are so many treatments being tried. Some find biofeedback and

self-hypnosis beneficial. Some have had blocks that were helpful, some have

had Lidocaine IV's that gave them relief. We're all different and there

isn't any one treatment. But, this RSD must be dealt with aggressively, to

avoid further spreading and to ease his pain as much as possible.

I hope that you can convince that asking for drugs is something he

needs to do if he doesn't take anything that's effective.

With hugs and pleasant thoughts!

Jo

CRPS/RSD

onelist. com

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Cookie here,a first of all I want to thank you for fighting this monster

with . I have had RSD for 8 yrs and it has completely destroyed my

life. I lost my JOB that I loved more than any material thing in my life. I

lost my partner at the time and most of all I lost my self esteem and love

for myself. All family with exception of one niece and all friends have gone

by as if I never existed.I was always the one everyone run to with their

problems or call for repairs when they wanted to save money on appliance

repairs. This was my profession and chosen love of life. I had 17 yrs down

when I lost life. But my body still stays here in pain. , we feel

that everyone thinks that we are faking this pain because they are ingot.

People that love us as my partner now tries to understand, they just cannot

because it is such a different pain. I cant seem to be able to describe the

feelings to them and especially to the doctors that don't care anyway.

, ask for those drugs and don't care what the doctor thinks, he

doesn't

care what you think or your pain,and as soon as you walk out and the next

dollar walks in he has already forgotten you and is back to feeling like GOD

to his next victim. I have been to over 60 doctors that I remember that work

comp sent me to and only one of them even knew what I was talking about when

I said RSD. Work comp stopped me from seeing him and my lawyer says there is

nothing I can do. They keep sending me to doctors that asked me what RSD

stood for and what did it mean.After I explained my understanding, they go

home and read a book. At next visit they seem to know more than I did about

how and where my pain was. When I say something about pain or location, I

hear NO that's not what the book says. That's not how you feel or RSD does

not

move, I let them experiment on me for 4 yrs then told not to come back

because they could not anything for me.I wasnt trying. They sent me to a

rehab doctor that I had to explain all and he became GOD over his book and

my life.Drugs and more drugs until I wasn't human..Now work comp has stopped

all. , this is a normal cycle for most of us.We cant give up or let

these doctors make us feel inhuman.Demand for pain meds. I have finally

found some friends that can understand my real pain and heart break. I am

still desperate looking for a GOOD RSD doctor and lawyer in Arkansas. We

will all fight as a unit. Thanks for someone finally listening!

Re: rsd Re: a and

> Hi PJ and All,

> a here. We want to thank everyone for their help, concern & info.

> has had such a hard time with this. Not only is he dealing with a Dr. that

> doesn't prescribe any other pain relief, but goes through the usual mess

with

> family & friends who do not understand & think he is " faking it " (imagine

> that!). I keep telling him that I think his Dr. is not treating this

> properly, yet he doesn't want to upset anyone by asking for drugs and

such. I

> told him he had the right to read his medical records to find out what was

> being said regarding his condition since the Dr. rarely has much to say at

> all other than treating him & herding him out (the guy does over 3000

nerve

> blocks like 's every year!). When he picked up his chart to read

it,

> the nurse took it away & said he didn't need to see it. WHAT? If anyone

knows

> of a neurologist in the Nashville, TN area, that would be great. I have

asked

> to make an appointment with my rheumatologist so he can get a

> referral for another Dr. (I have mentioned 's RSD to my Dr. & he

> seemed to know a whole lot more about it than anyone else has), bone scan,

> etc., since the anesthesiologist doesn't work with anyone else regarding

the

> treatment of the RSD. I love & will NOT sit by & watch him suffer.

I

> don't care how far we have to travel to find the right Dr., we will find

one

> that will work with him to ease the pain. Thanks again to everyone for

being

> here for us.

> Hugs & Love to All,

> a

>

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

> Remember four years of good friends, bad clothes, explosive chemistry

> experiments.

> http://click./1/4051/0/_/706883/_/958099580/

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

>

>

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HELLO,

I know what you are saying about dr. and everything even with family,, i do understand... please know i am praying for you and your family... i am setting here right now with alot of pain... man it is hard,, you have my prayers, may god bless you

ANITA R

garrett@...

Re: rsd Re: a and > Hi PJ and All,> a here. We want to thank everyone for their help, concern & info.> has had such a hard time with this. Not only is he dealing with a Dr. that> doesn't prescribe any other pain relief, but goes through the usual messwith> family & friends who do not understand & think he is "faking it" (imagine> that!). I keep telling him that I think his Dr. is not treating this> properly, yet he doesn't want to upset anyone by asking for drugs andsuch. I> told him he had the right to read his medical records to find out what was> being said regarding his condition since the Dr. rarely has much to say at> all other than treating him & herding him out (the guy does over 3000nerve> blocks like 's every year!). When he picked up his chart to readit,> the nurse took it away & said he didn't need to see it. WHAT? If anyoneknows> of a neurologist in the Nashville, TN area, that would be great. I haveasked> to make an appointment with my rheumatologist so he can get a> referral for another Dr. (I have mentioned 's RSD to my Dr. & he> seemed to know a whole lot more about it than anyone else has), bone scan,> etc., since the anesthesiologist doesn't work with anyone else regardingthe> treatment of the RSD. I love & will NOT sit by & watch him suffer.I> don't care how far we have to travel to find the right Dr., we will findone> that will work with him to ease the pain. Thanks again to everyone forbeing> here for us.> Hugs & Love to All,> a>> ------------------------------------------------------------------------> Remember four years of good friends, bad clothes, explosive chemistry> experiments.> http://click./1/4051/0/_/706883/_/958099580/> ------------------------------------------------------------------------>>

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