TIM

[Guest guest]

Jo,

Thank you for the kind words of support. From what I understand now

that I have talked to my wife is that the blood test showed elevated

levels of a tumor receptor. It is not uncommon for cancer survivors

to have these receptors, but when they are elevated there is a tumor

somewhere. Man what a month my mother-in-law Dawn's and 's mom

has just had two lobes of her right lung removed because of lung

cancer and my Dad was in the hospital the same time because they

could not stabilize his heart rate, he had a stroke several years ago

so they were quite concerned...Not on the pity pot yet

This is the second IME I have had. The first IME Doctor's diagnoses

was CRPS as was my Othropedic suregon, and pain management doctor.

the company doctor thought a fourth opinion might be in my best

interest and scheduled my for another IME. For some reason I

really like this Doctor, he seemed to be very knowledgeable on RSD

and had me in his office for two hours interviewing and examining me.

Unlike a car problem that vanishes at the shop, my right had was

about five degrees warmer than my right and sweating as well as my

under arm, I always complained of this, but its the first time it

happened in the doctors office. At the end of the examination he said

that I am not pretending to be in pain he knows that , I am not crazy

I have RSD/CRPS. He was going to review an emg I had done prior to my

Ulnar Nerve Transposition before he writes the final report, but he

feels nothing in the emg will show otherwise. He called my company

after I left and gave them the preliminary finding of RSD so I was

really supprised.

Anyway the headaches I described to him were vise like headachs, not

the pulsating or pounding type. The tissue around my eyes are tender

to the touch, light, sound, and movement exacerbate the pain. Also

very sensitive to sound, what I hear sounds like I am in a tube.

The pain normally starts at the rear of my head, burning sensation on

my skin behind my ear and then mild pain which move from the back to

the front, if I am lucky it remains a medium type headche, however if

I have been in a car or going up and down stairs it turns into that

migrane type headache. My memory loss he contributes to the RSD as

well, they are not sure if it is a direct result of the damaged

Sympathetic Nervous System or a result of cronic pain and

fatique..but it is one of the symptoms.

I have an appointment with a nurologist Friday and after that from

what I understand they will put together a plan of action and start

with a series of sympathetic nerve blocks and go from there. He also

offered to take over my treatment if my doctors did not feel

comfortable about treating the RSD.

Anyway thats all for now, I would ask your doctor why he thinks your

headaches are from something other than RSD, everything I have read

mentions headches/migranes associated with RSD. I would also ask him

if its not RSD related why he is not running test to find out what is

causing it.

I wrote an article about Dawn that was published in Self Magazine

last year, I will try and find it on the net and provide you all with

the link or I will scan it an put it up on my website.

Thanks again!

Tim

[Guest guest]

Hey Tim,

Your headaches sound like mine... I cannot remember the last time I didn't have a headache, it just varies in intensity. It has been rather difficult to get used to, and I'm still hoping for some type of miracle cure.

I am not sure why my Dr thinks my headaches aren't RSD. I am thinking of changing Drs. anyway, I need "fresh blood" and new ideas anyway. I either seem to wind up with a "med" Dr., one who thinks the only treatment is medication or a "procedures" guy. I want someone who will treat all of me, and respects my wishes. Not easy to do with pain mgmt.

I can understand what your family is going through. Both of my parents were diagnosed with cancer within a month of each other (breast and colon, respectively) and had to battle through chemo, radiation, etc. at the same time, without the real "help" of the other. I was scared to death, worried about losing both parents at once. I am very thankful that I can say they are both cancer survivors... It was a very difficult time for our family. My thoughts and prayers are with you all. I truly believe that had a lot to do with their recovery (people's thoughts and prayers).

I'm interested in reading the article on Dawn. Forward it when you can!

Hugs,Jo

[Guest guest]

Tim,

I get the same type of headache. Pain doc gives me a block every 6 months or so.

It can be debilitating.

Welcome

New Kid Laurie

[Guest guest]

> The pain normally starts at the rear of my head, burning sensation

on

> my skin behind my ear and then mild pain which move from the back

to

> the front, if I am lucky it remains a medium type headche, however

if

> I have been in a car or going up and down stairs it turns into that

> migrane type headache.

> Tim,

> Hi I don't think I have actually welcomed to the group, so welcome

if I have oh well I can blame it on RSD LOL. You are not alone in

your headaches you have just described the ones I get.

> Lin

>

Thanks Lin...If I had to choose between the pain in my arm and the

headches I take the arm any day of the week, headaches have my

number, I can tolerate just about anything but not headaches.

Tim

[Guest guest]

>

> Tim,

> I get the same type of headache. Pain doc gives me a block every 6

months or so. It can be debilitating.

> Welcome

> New Kid Laurie

Thanks Laurie,

I have only had the epidoral treatments but it was for my nerve roots

at the C5 and they did nothing for the pain...Are you referring to

Sympathetic block? and dose it work on the pain else where in your

body?

Tim

[Guest guest]

,

I have been really fortunate in a sense that every doctor I have seen

has diagnoised RSD, so there is no debating opinion, I really hope

they are wrong but odds are they are right. My last IME was over two

hours and he diagnoised RSD. I sort of in a quandry, the IME doctor

offered to treat me and he definately has the credentials and I like

him on top of that...but he dose in essence have a working

relationship with my company, my orthopidic dosent know a whole lot

about RSD and he will probably refere me to someone that dose.

Have they already given you an MMI?

> Tim

>

> Makes sense. Their doc gave me a rating, they didn't like it so

sent me for

> another, that one was higher.

>

>

>

> In a message dated 4/29/2004 4:01:30 PM Eastern Standard Time,

> RSD-CRPSofAmerica writes:

> From: " ilducks2004 " <ilducks2004@y...>

> Subject: Re: Hey all, Update

>

> ,

>

> I agree, but in my case it helps. The two IME the company arragend

> have the same diagnosis as my doctors, kind of makes it hard for

them

> not to proceed with the proper treatment protocal. Hopefully the

few

> months of incovienence will afford me the oppurtunity to reveive

the

> medical treatments required. I see the companys point, the costs

> associated with this can be staggering espicially if it is a long

> term condition. Now I might have a change of opinion if they send

me

> to another one in a week or so

>

> Dawn has been wanting my wife and I to move in with her or closer

to

> her and her husband since she was first diagnoised. When I first

was

> injured I was able to take her to her treatments and Doctor

> appointments and my wife picked up the days I couldn't so I think

its

> comforting to her to have us with her. My wife is staying there now

> and I know that it helps Dawn tremendously that is there for

> her. I miss my wife but Dawn is facing something horrible and I

> wouldn't want it any other way.

>

> Tim

[Guest guest]

Tim,

Pardon my not knowing the exact name of block. By the time I see pain Doc. I

can't see straight. It takes about a week to 3 days to be effective. and only

last around 5 months. He injects right into the L back side of my head. It's an

excruitiating headache or maybe head pain. The injection is not 100% but it's

better than nothing.

Otherwise I can't move my head, talk , feel any vibration. I don't get nauseated

from headache. Do you? I have had migrianes but this type of headache doesn't

even come close, it goes beyond.

Hope this helps some.

Laurie

[Guest guest]

Laurie,

So the injections are just for the headaches...I guess they will

treat the other effect areas differently? Hell I passed out twice

under a seditive when they were doing the epiderals...didn't feel any

pain but I droped right out.

I have headaches for about three days out of the week, the mild ones

are not throbbing but like your head is in a vise, if I ride in a car

or drive for any period of time I will get a headache if I don't

already have one and it usually turns into a sever headache. all I

can say is that it feels like you head is about to implode, sounds

and light make it even worse. My hearing is really wierd when I have

one of these sever headaches I describe it as the sounds you hear out

of a bad speaker when you turn up the volume more distorted and

crackely. I have absolutely no nausia and movement is unbearable.

I was feeling good this morning so I went to the IGA and got a hair

cut, drove about 10 miles round trip..gravel roads out here..and

about an hour after I got home the headache appeared.

Not headache related- I have also noticed that I itch around my Right

elbow forearm and shoulder and now my scalp. I have little bumps on

my skin that I can feel but you can't see them I have no idea if this

is related to RSD but I have never had skin problems before..the only

reason I brought it up is I am about to take the skin off my

shoulder .

>

> Tim,

> Pardon my not knowing the exact name of block. By the time I see

pain Doc. I can't see straight. It takes about a week to 3 days to be

effective. and only last around 5 months. He injects right into the L

back side of my head. It's an excruitiating headache or maybe head

pain. The injection is not 100% but it's better than nothing.

> Otherwise I can't move my head, talk , feel any vibration. I don't

get nauseated from headache. Do you? I have had migrianes but this

type of headache doesn't even come close, it goes beyond.

> Hope this helps some.

> Laurie

[Guest guest]

Tim,

I have been know to be headache prone. Thinks it's part of RSD. Sometimes it

feels like my eyes are going inside my head. I think also the sun shinning

starts them out. Have learned to wear sunglasses and go to a quiet place. Like

down by the river. I have to stopp all imput to my brain. Ice helps sometime.

The pain starts in one spot in back of head and just spreads. Just moving my

head one way or the other sets off spasms of pain. Usually on a scale of 1 to 10

being the worse it's a 5. I also use alot of excedrin . I think it's the

caffiene.

Hope your evening is restfull.

Laurie

[Guest guest]

Laurie,

Day started off good, got a few hours of uninterupted sleep. Went to

the neurologist today. So two days of long trips and extending my arm

in various ways..well to say I am a bit sore is an understatement.

For the headaches I have found nothing otc that has really worked,

and I am sensitive to ice...(really bad burning sensation)I cant pick

anything up that is cold burns and hurts to the bone.

Had blood work done and emgs, nerve conduction and eeg done next

week. And as typical in this mess he tells me we will know more when

the test are completed but when I got to the hospital for the blood

work they gave me his script order for the other test and under

diagnosis...numbness and Post Traumatic Strees Syndrom. Now I don't

know if he put that down for codeing purposes or what but I know what

PTSS is I know to many vets that have it...I don't. His days are

numbered...first thing out of his mouth was...your eyes are so red

what are you stressed about that you don't sleep....PAIN YOU IDIOT!

I have to have the test done anyway and regardless of his diagnosis I

am going to another doctor, he had his mind made up before I was even

finished giving him my surgical history.

Its been 15 months since I was injured and the last eight months I

have had two or three epidorals which didn't work and nothing

else...I am getting to the point that I just want to put a foot up a

doctors (.) But I am in fine spirits (in my world anyway) just keep

on plugging along till we get some results.

Hope you are doing well today..and aplogize for dumping on ya!

Tim

>

> Tim,

> I have been know to be headache prone. Thinks it's part of RSD.

Sometimes it feels like my eyes are going inside my head. I think

also the sun shinning starts them out. Have learned to wear

sunglasses and go to a quiet place. Like down by the river. I have to

stopp all imput to my brain. Ice helps sometime. The pain starts in

one spot in back of head and just spreads. Just moving my head one

way or the other sets off spasms of pain. Usually on a scale of 1 to

10 being the worse it's a 5. I also use alot of excedrin . I think

it's the caffiene.

> Hope your evening is restfull.

> Laurie

[Guest guest]

Thank you Tonya and you are so right!

I just dumped on poor Laurie so I wont you, when they start treating

me I will suggest the medications you desrcibed...I wrote them down

so I wouldn't forget...just hope I remeber where I put them when the

time comes

Have a great night

Tim

> Tim,

> I'm so sorry about your SIL. It sounds like you got lucky when you

got

> inlaws......I got a great FIL and MIL when I got married....but, if

my SIL

> and Nephews just disappeared off the face of this earth, it

wouldn't hurt my

> feelings any! In fact, I would throw one heck of a party, and Since

no one

> else in this town likes them either, I KNOW it would be a Huge

party!!!!

> lmao

>

> What I wanted to say though, is that the odds of the RSD spreading

is great.

> ...because 70% of those that do have it, does have some spread.

But, I'm

> hoping that you are in the %30 range....and it never spreads!

>

> The Migraines and RSD Headaches though are just part of having RSD.

It

> sounds like yours is more of an RSD Headache though...in which

normal

> Migraine meds don't help with...OTC or Prescription. And, there is

nothing

> out there to actually help with them either, so we are left trying

to find

> anything possible to help get rid of them.

>

> I was on a combination of meds up to January that really helped

me....if I

> did get one, it was really mild. But, because of these 3 meds, I

rarely got

> one any longer.

> I was on Paxil, Seroquel and Topamax. These 3 meds were a life

saver for me

> when it came to those headaches...along with the severe anxiety

attacks.

> Seperately though, the paxil was for my Depression, the Seroquel

was for the

> depression, sleep, anxiety attacks and the Topamax was for the

muscle spasms

> and burning pain.

>

> So, by being on just those 3 meds....3/4 of my symptoms were taken

care of.

> All I had left was my pain meds to take care of the rest of it.

>

> I know that what helped me might not help anyone else......but, if

someone

> is on good insurance or State Medical.....and have the headaches,

muscle

> spasms, burning, anxiety attacks, and Depression.....I would

definately

> recommend that they try this combo themselves, and see if it does

help. Give

> it 2 months though...at least, if not 3 before determining that it

doesn't.

> It does take a little while for some of it to start working. And,

the doses

> need to be adjusted.....

>

> That is why I said to give it at least 2-3 months, but, if you are

on good

> enough insurance where you don't have to pay very much for your

meds.....I

> would suggest being on this combo for 6 months for the full

effects, because

> by then, the doses should be upped enough to actually help if it is

going to

>

>

> The way I've come to think of things now, after having RSD,

Fibromyalgia,

> and disc problems in my back......along with the

Depression.......anything

> is worth a try, no matter how long it takes to get it up to the

full doses.

> With uncurable diseases, we have our whole lives to find meds that

works, a

> cure, or anything else.

>

> 6 months is a drop in the bucket time wise compared to a lifetime.

>

> Tonia

>

> -------Original Message-------

>

> Now from what I understand RSD will often spread to another part of

> the body on the same side as the original injury or will spread

> across to the opposite limb...sounds like that may be a possibility

> in your case. My problems began after an Ulnar Nerve transposition

of

> my right elbow. Other than pain and weakness in my right arm and

> shoulder, headaches and irritability it hasn't really taken hold

> anywhere else. The numbness of my right toes and knee cap are

> sporadic at best, hopefully they will stay that way.

>

>

> Tim

[Guest guest]

Tonya....didn't want to be mean since I am in one of my agitated

moods but as far as in-laws..well I will be nice and refrain from

expressing my true feelings. Dawn undoubtably is the best, she is a

sister! When I was hurt in the Army and had surgery on both my legs

she gave up her spring break and stayed with and I for almost

two weeks taking care of me...she was 14 then. She is the baby of the

family and my wife pratically raised her. Dawn has my wife and I for

support, and some of her close friends, but its not the quantity its

the quality and I have to say my wife God love her has done just

wonders. I am bragging on her..she has had so much on her plate I do

not know how she has stayed sane. Her mother has lung cancer and is a

basket case, then Dawn and of course my crabby butt. On top of that

when I was injured in Feb last year she had to have a historectomy

and we have no childern so that in itself was devistating to her.

I am so fortunate to have her!

Well again have a wonderful evening and a grat weekend!

Tim

> > Tim,

> > I'm so sorry about your SIL. It sounds like you got lucky when

you

> got

> > inlaws......I got a great FIL and MIL when I got married....but,

if

> my SIL

> > and Nephews just disappeared off the face of this earth, it

> wouldn't hurt my

> > feelings any! In fact, I would throw one heck of a party, and

Since

> no one

> > else in this town likes them either, I KNOW it would be a Huge

> party!!!!

> > lmao

> >

> > What I wanted to say though, is that the odds of the RSD

spreading

> is great.

> > ...because 70% of those that do have it, does have some spread.

> But, I'm

> > hoping that you are in the %30 range....and it never spreads!

> >

> > The Migraines and RSD Headaches though are just part of having

RSD.

> It

> > sounds like yours is more of an RSD Headache though...in which

> normal

> > Migraine meds don't help with...OTC or Prescription. And, there

is

> nothing

> > out there to actually help with them either, so we are left

trying

> to find

> > anything possible to help get rid of them.

> >

> > I was on a combination of meds up to January that really helped

> me....if I

> > did get one, it was really mild. But, because of these 3 meds, I

> rarely got

> > one any longer.

> > I was on Paxil, Seroquel and Topamax. These 3 meds were a life

> saver for me

> > when it came to those headaches...along with the severe anxiety

> attacks.

> > Seperately though, the paxil was for my Depression, the Seroquel

> was for the

> > depression, sleep, anxiety attacks and the Topamax was for the

> muscle spasms

> > and burning pain.

> >

> > So, by being on just those 3 meds....3/4 of my symptoms were

taken

> care of.

> > All I had left was my pain meds to take care of the rest of it.

> >

> > I know that what helped me might not help anyone else......but,

if

> someone

> > is on good insurance or State Medical.....and have the headaches,

> muscle

> > spasms, burning, anxiety attacks, and Depression.....I would

> definately

> > recommend that they try this combo themselves, and see if it does

> help. Give

> > it 2 months though...at least, if not 3 before determining that

it

> doesn't.

> > It does take a little while for some of it to start working. And,

> the doses

> > need to be adjusted.....

> >

> > That is why I said to give it at least 2-3 months, but, if you

are

> on good

> > enough insurance where you don't have to pay very much for your

> meds.....I

> > would suggest being on this combo for 6 months for the full

> effects, because

> > by then, the doses should be upped enough to actually help if it

is

> going to

> >

> >

> > The way I've come to think of things now, after having RSD,

> Fibromyalgia,

> > and disc problems in my back......along with the

> Depression.......anything

> > is worth a try, no matter how long it takes to get it up to the

> full doses.

> > With uncurable diseases, we have our whole lives to find meds

that

> works, a

> > cure, or anything else.

> >

> > 6 months is a drop in the bucket time wise compared to a lifetime.

> >

> > Tonia

> >

> > -------Original Message-------

> >

> > Now from what I understand RSD will often spread to another part

of

> > the body on the same side as the original injury or will spread

> > across to the opposite limb...sounds like that may be a

possibility

> > in your case. My problems began after an Ulnar Nerve

transposition

> of

> > my right elbow. Other than pain and weakness in my right arm and

> > shoulder, headaches and irritability it hasn't really taken hold

> > anywhere else. The numbness of my right toes and knee cap are

> > sporadic at best, hopefully they will stay that way.

> >

> >

> > Tim

[Guest guest]

Tim,

Unless you have been outside in an area where there could be poison ivy.....it is RSD related.

The itch is a different type of nerve thing to drive you crazy....I swear! and, like you describe....you just want to tear the skin completely off! I really hate it when I get a spot like that....because it feels like the more you scratch, the deeper the itch feels.....clear down to the bone. By then, on me, that spot is totally numb and bleeding.

Tonia

-------Original Message-------

Not headache related- I have also noticed that I itch around my Right elbow forearm and shoulder and now my scalp. I have little bumps on my skin that I can feel but you can't see them I have no idea if this is related to RSD but I have never had skin problems before..the only reason I brought it up is I am about to take the skin off my shoulder .

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Barbara,

Oops type 'o' on the PTSD.

I was injured in the service about 20 years ago and part of thier

treatment was evaluating you to see if you showed sighs of PTSD and

then let you know what the signs and symptoms were incase you

developed it. I am contacted at least yearly by a VA counselor and

some of the questions that are asked are used as tools to see if PTSD

exisit and I as well as they think I am doing just fine in that

regards...but I guess they could be wrong.

I don't know, its frustrating that you have the majority saying one

thing then one says different and its back to getting more opinions.

I mean the only questions I remeber him asking were do you do drugs

or alcohol and what kind of stress I was under thats keeping me

awake. And what the other Doctors diagnoised.

The only reason I am concerned with the diagnosis is

1) he assumed that not sleeping and agitation and memory problems

were related to stress as apposed to being associated with pain and I

told him that the pain was keeping me up at night.

2)I just don't want to go through another eight months of head

scraching because of his opinion...He quit listening 5 minutes into

the 10 minute exame...I think patients deserve better regardless of

thier condition.

I do not want either condition, but I also don't want to continue

this roller coaster...I am not on a pitty pot, just am tired of

hanging in the air and subjecting the people I care for with

wonderful attitude that exist when I'm feeling like crude. Untill

there is a definative diagnosis and then a treatment protacol

established you feel its never going to end or at least get

better...think thats the worse part of all this..in my case anyway..

Thanks Barbara..your suggetions and knowledge are alway welcome!

Tim

> >

> > Tim,

> > I have been know to be headache prone. Thinks it's part of RSD.

> Sometimes it feels like my eyes are going inside my head. I think

> also the sun shinning starts them out. Have learned to wear

> sunglasses and go to a quiet place. Like down by the river. I have

to

> stopp all imput to my brain. Ice helps sometime. The pain starts in

> one spot in back of head and just spreads. Just moving my head one

> way or the other sets off spasms of pain. Usually on a scale of 1

to

> 10 being the worse it's a 5. I also use alot of excedrin . I think

> it's the caffiene.

> > Hope your evening is restfull.

> > Laurie

>

>

>

>

>

[Guest guest]

Tim- It sure makes sense to me that you're frustrated. I bet that his throwing in the PTSD diagnosis (and thus attributing your sleep difficulties to psychiatric issues) really discounts the significance of the pain that you're experiencing. I hope that you set the record straight. I'm thinking that instread of all of us typing here each day that we should instead all move to one little compound and put our efforts into developing a vaccine that we could inject these "doubting docs" with. Let 'em walk a mile in our shoes.

While all of this reminds me of how incredibly lucky I have been with my own doctors, I really feel for those of you who have to go around proving yourselves in order to get the treatment you so desperately need and deserve. Frequently I wonder if the fact that some of the folks here are involved in workmans comp issues is the complicating issue. Individuals/government trying to counter w/c claims and lawsuits seem to go to incredible lengths to minimize the symptoms of folks with RSD (heck, with any other disease or condition too)! Try to hang in there. Barbarailducks2004 wrote:

Barbara,Oops type 'o' on the PTSD.I was injured in the service about 20 years ago and part of thier treatment was evaluating you to see if you showed sighs of PTSD and then let you know what the signs and symptoms were incase you developed it. I am contacted at least yearly by a VA counselor and some of the questions that are asked are used as tools to see if PTSD exisit and I as well as they think I am doing just fine in that regards...but I guess they could be wrong.I don't know, its frustrating that you have the majority saying one thing then one says different and its back to getting more opinions. I mean the only questions I remeber him asking were do you do drugs or alcohol and what kind of stress I was under thats keeping me awake. And what the other Doctors diagnoised.The only reason I am concerned

with the diagnosis is 1) he assumed that not sleeping and agitation and memory problems were related to stress as apposed to being associated with pain and I told him that the pain was keeping me up at night. 2)I just don't want to go through another eight months of head scraching because of his opinion...He quit listening 5 minutes into the 10 minute exame...I think patients deserve better regardless of thier condition.I do not want either condition, but I also don't want to continue this roller coaster...I am not on a pitty pot, just am tired of hanging in the air and subjecting the people I care for with wonderful attitude that exist when I'm feeling like crude. Untill there is a definative diagnosis and then a treatment protacol established you feel its never going to end or at least get better...think thats the worse part of all this..in my case anyway..Thanks Barbara..your suggetions and knowledge are

alway welcome!Tim> > > > Tim,> > I have been know to be headache prone. Thinks it's part of RSD. > Sometimes it feels like my eyes are going inside my head. I think > also the sun shinning starts them out. Have learned to wear > sunglasses and go to a quiet place. Like down by the river. I have to > stopp all imput to my brain. Ice helps sometime. The pain starts in > one

spot in back of head and just spreads. Just moving my head one > way or the other sets off spasms of pain. Usually on a scale of 1 to > 10 being the worse it's a 5. I also use alot of excedrin . I think > it's the caffiene.> > Hope your evening is restfull.> > Laurie> > > > >

[Guest guest]

Barbara,

Not a good idea, could you imagine the traffic jams because people

forgot where they were going?

I have been lucky in the sense that I have had 2 IME's and my doctor

diagnosis RSD/CRPS. The last IME doctor I went to offered to take on

my case and I was tempted...he was very knowledgeable and the exam

was nearly three hours. I did a search on Google for St. Louis and he

was a highly rated Pain Management Doctor so I don't think he was the

so called 'Company Hack' and I can't complain about the way the

companies medical department is handling it. Again both their IME had

the same diagnosis. I am sure they cringe at the diagnosis but I

think they want an answer as well.

I think the problem lies with doctors who lack knowledge of RSD or

believe that all pain syndromes are physiological being thrown into

the mix. There is to much evidence out there to suggest otherwise.

But again if you have a doctor who is knowledgeable and is the " team

leader " he will discount these doctors or never send you to them in

the first place.

My plan is to let him conduct the test, they will need to be done

anyway in the mean time I am going to contact my attorney and suggest

that they send me to -Jewish-Washington University Hospital

Pain Management facility, they are rated one of the top 35 pain

management facilities in the Country and specialize in many areas

including RSD/CRPS. It's a drive, but they have the team concept, one

doctor is the primary and the others report their findings and then

work together on the treatment. I am sure that what ever my condition

is they can identify it and treat it.

Well off to do some house work, again thank you all for the support

and kind words!

Tim

> > >

> > > Tim,

> > > I have been know to be headache prone. Thinks it's part of RSD.

> > Sometimes it feels like my eyes are going inside my head. I think

> > also the sun shinning starts them out. Have learned to wear

> > sunglasses and go to a quiet place. Like down by the river. I

have

> to

> > stopp all imput to my brain. Ice helps sometime. The pain starts

in

> > one spot in back of head and just spreads. Just moving my head

one

> > way or the other sets off spasms of pain. Usually on a scale of 1

> to

> > 10 being the worse it's a 5. I also use alot of excedrin . I

think

> > it's the caffiene.

> > > Hope your evening is restfull.

> > > Laurie

> >

> >

> >

> >

> >

[Guest guest]

-------Original Message-------

PTSD.I was injured in the service about 20 years ago and part of thier treatment was evaluating you to see if you showed sighs of PTSD and then let you know what the signs and symptoms were incase you developed it.

=============================================

Tim,

Could you tell me the signs and symptoms?

I had something happen 2 days before I got hurt on the job....and then when I did get hurt....

Some things just don't add up to "Normal"....and I'm thinking that I may be suffering from PTSD myself.

But, I don't want to actually do or say anything about it to anyone here at "home" unless I know exactly what the signs and symptoms are, and determine if I have it myself.

If you want, you can email me privately at iowa97@...

Thanks Tim,

Tonia

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Well, Tim,

Glad to hear that you are going to see a new neurologist... If you want, you

can add my foot to yours, although mine isn't that big.

I get tired of trying to explain to Drs. that it is very difficult to sleep when

you HURT.

Yeesh.

Jo

[Guest guest]

put our efforts into developing a vaccine that we could inject these "doubting docs" with. Let 'em walk a mile in our shoes.

Barbara,

That is a wonderful idea! While doing that possibly we could come up with another for 'consideration and respect for the patient'. Maybe we could get everything into one large injection. We also will need oversized shoes for them to wear, doubt some of them would make it out the door let alone a mile. I totally agree with you!

I went thru all the w/c mess, won the case, etc. The judgement the court handed down in my case is crystal clear, however, w/c does not comply (I was granted lifetime medical care). They still owe payments for a few of the IME's I was sent to, when their offices call I give them the lawyer's number. We are not responsible for payment, w/c owes them the money.

We have been using our personal health insurances and keeping all receipts, just as our attorney advised, luckily found a wonderful Neurologist/RSD Specialist almost two years ago who w/c refused to cover. Our heath insurance covers part of it since we were sent a letter from w/c stating they refused payment and our insurance company has it on file. In the event w/c does finally pay, they will have to reimburse the insurance company.

Hoping for Pain Free Days,Sandi

[Guest guest]

Lori,

Just Posted the list on the message board.

Tim

> Tim,

> Do you have a site to go to for the top pain management facilities

in the

> country? I would be interested to see where the facility my doctor

wants me to go

> to is ranked. Let me know, thanks!

> Lori

[Guest guest]

I am not at all confident in this Dr., and rest assured if the EMG is

that painful he will be crawling out of the room.

> Tim,

>

> Stay away from the EEG!!! Unless its absolutely necessary.....

>

> That is the MOST PAINFUL thing someone with RSD can have done!

>

>

> I had to have one done....and, quite a few members here warned me

about it.

> So, I doubled up my pain meds that I had left from the ER one

time.....I

> took 1 Vicodin 3 hours before the appt, and then, 2 hours later, I

took 2 of

> them.....for a total of 3, hoping that it would help.

>

> Well, the whole waiting room at that doctor's office heard me

scream and

> yell and cry for 45 minutes straight. When I left, the doctor wasn't

> standing straight up either!!!! I kind of helped the last jolt,

along with a

> muscle spasm.....and made sure that my foot went in the right

direction!

>

> Lets just say, his voice was a higher pitch, and, I'm hoping that

he had to

> take the rest of the day off!

>

> Tonia

[Guest guest]

Tim,

I'm glad you realized that I meant EMG and not EEG....lol. S*rry bout that...

Well, the jerk I had doing mine I know had to be talking in a higher pitched voice for a few days if not weeks! I didn't stick around long enough to see if he could walk or crawl....

I just wanted out of there!

Tonia

-------Original Message-------

I am not at all confident in this Dr., and rest assured if the EMG is that painful he will be crawling out of the room. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Unreal, Sandi. Isn't there some way you can hold W/C accountable? Just one more example of why I am soooooo glad that my RSD has nothing to do with a work-related injury. What an RSD pain-in-the-butt. Barbara

[Guest guest]

Isn't there some way you can hold W/C accountable?

Every call to our attorney (who got paid already) has not been returned since August 2003, prior to that it was sporadic at best. Before court however, he got back to us within a day.

Last we were told was "continue saving receipts." We asked him who actually oversees w/c after the judgment is handed down and he stuttered something that we may have to go back to court. We made appointments to go into his office with paperwork, bills, etc., and twice his secretary called us an hour before to advise he was tied up in court and had to reschedule, once we got there and he wasn't there and we didn't get a phone call. We have been considering a new attorney for sometime now, I haven't been up to going through everything all over again, the added stress.

Hoping for Pain Free Days,Sandi

[Guest guest]

Well Barbara woke up this morning so the day had started off right

My home life well it's a zoo....literally....with the dogs and birds.

OK I must confess I do like organized chaos!

When you counsel people do you try and give them the tools to

organize their lives or just cope with their problems?

About 5:30 every morning and then again from 12:00 - 2:30 p.m. and

then again at 6:00 p.m the birds have a shouting fest. They not only

yap at each other but the wild birds outside. Thank goodness we live

rurally. Other than them it is very quiet and uncluttered here.

I think maybe there is more internal personal chaos in my life and I

use to try and control it, but I didn't learn anything about myself.

You know, now I have a better understanding of me and a larger

picture of the world and all its possibilities.

Growing up you were taught or conditioned that life was one way,

salvation was obtained one way, joy was obtained one way you name it

the society or class your were associated with had the road map to it

all, and shame on you if you asked questions that did not have an

answer.

Its funny but as we write about these things I just realized that I

am not scared, maybe that is the what is eating at my wife, she likes

structure and a sense of control and I have resigned myself to riding

the wave of life. Is it irresponsible? I guess it could be looked at

that way, but I am less disappointed, and more appreciative of things

than I use to be....Give me the strength to change the things I can

and the strength to except those things which I can't....really never

thought about that before...it really makes sense now.

Well enough of philosophy for a while...I hope you all have a great

day!

Tim

> Thanks, Tim. Having also attended Catholic schools for the first

14 years of my life, I can understand what you're saying about the

need to back off from rigidity and structure. Interesting for me to

think about it. The two major parts of my life are in direct

opposition to each other. At work I am surrounded by chaos. The

major focus of my professional life is to help others experience,

identify and make sense of the chaos in their lives and then develop

strategies for coping with the dysregulation (I guess I'm a

professional " organizer. " ). My home life is about as serene as it

comes.....very little chaos. When something comes along that has the

potential for throwing a wrench into the mix, I typically just see it

for what it is and then flow with it. I find myself actively

avoiding the structuring of my leisure time...perhaps my way of side-

stepping having to follow a clear path.

> Re talking about RSD with others in my life, by necessity I've

spoken more about it in the past year than in the almost 13 years

that I've had it. The folks at work know that I have problems with

my arm and hand but almost all of them just ascribe it to permanent

damage from the injury that I had. Only a few folks know about the

RSD part and they are unaware of the presence of it elsewhere in my

body. When everything really hit the fan last year, my sister was

ballistic about the fact that I had downplayed (understatement) what

had been going on for so many years. Maybe I need to reflect more on

what happens with me that I tend to keep that kind of stuff so close

to my chest. I'm rambling here but, like you said, that kind of

posturing tends to " play havoc with those who love you. " I

understand her frustration. Although it was not my intention, my

silence wasn't meant to be hurtful to her or anyone else. So much to

think about. Thanks for raising things that gave me an

> opportunity to do that. Barbara (hoping that you and others here

have a good enough day)