question

December 22, 2002

Hi Kim,

My name is , and I live in the Poconos PA. It is called the McGill Pain Index Chart. If you ever lose this you can always just do a search and you will find it but once you pull it up, just put it in favorites. All my love, your new sis http://www.rsdcare.org/McGill%20Pain%20Index.html

-- Question

Hi Y'all,I once came across a chart that rated RSD pain compared to other sources of pain. Do any of y'all know what I'm talking about or where I might find the chart again??Hope you're all having a wonderful holiday!Kim

July 2, 2003

Jane,

For one, watch saying the S*rry word! Deb G will get ya for that one! lol....I know.....I was the first one she got!

Ok....this is better.

For 2....an EMG is a very painful test to begin with that tests your nerves to rule out any Neuropathy. This would be a different type of pain disorder they would be able to treat somewhat differently. I'm not exactly sure what the treatments are for this, whereas someone else in this group may know more....I actually think someone else may have Neuropathy along with the RSD in this group.

The MRI......let me think here (which is hard to do with these kids!) The MRI checks your muscles...to see if there is any tearing, any wasting away, etc.....

Now, the Neurontin. The Neurontin will help if you have any muscle spasms, burning pain and the like. Neurontin is actually only FDA approved for epilepsy, but has found to be useful for other disorders that have some of the same properties, as the spasms and burning pain.

There are other medicines that also helps besides Neurontin, as Topamax, Gabitril, and many others.

Other medicines that those with RSD may take for symptoms are as is: (all meds vary from person to person)

Antidepressant

Anti-seizure (Neurontin,Topamax)

Muscle Relaxer

Sleeping Pill

Pain Killer...Narcotic or Non-Narcotic. This is strictly up to the patient and their wishes usually

Those are just the basic medicines. As time goes on, and the RSD may spread, it can affect internal organs, blood pressure, or any other bodily functions. So, it usually ends up meaning that we have to take other medicines to help with those problems also.

Some people are "lucky" enough that their RSD stays in only one area. I say "lucky" like that because anyone who has RSD suffers the same no matter where they have it....in just one area, or full body. We all suffer thru the pain. Just those who have it only in one limb or foot or hand can move around easier at times than someone who has it full body, depending on weather, stress, living conditions, Doctors, medicines, etc.

I didn't mean to make this so long and boring....but, trying to explain RSD isn't easy to do....especially in a short e-mail! lol

To make it somewhat short....RSD is very hard to prove, diagnose and make others believe due to it is almost an invisible disease. By invisible meaning unless you have it, no one else is going to believe you when you tell them how bad the pain feels. RSD, like any Chronic Pain, affects your body, your Mental conditions, your emotional conditions, your family life, the way your friends treat you....the works. It will change the way you live for the rest of your life.

Tonia

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

July 2, 2003

Jane,

For one, watch saying the S*rry word! Deb G will get ya for that one! lol....I know.....I was the first one she got!

Ok....this is better.

For 2....an EMG is a very painful test to begin with that tests your nerves to rule out any Neuropathy. This would be a different type of pain disorder they would be able to treat somewhat differently. I'm not exactly sure what the treatments are for this, whereas someone else in this group may know more....I actually think someone else may have Neuropathy along with the RSD in this group.

The MRI......let me think here (which is hard to do with these kids!) The MRI checks your muscles...to see if there is any tearing, any wasting away, etc.....

Now, the Neurontin. The Neurontin will help if you have any muscle spasms, burning pain and the like. Neurontin is actually only FDA approved for epilepsy, but has found to be useful for other disorders that have some of the same properties, as the spasms and burning pain.

There are other medicines that also helps besides Neurontin, as Topamax, Gabitril, and many others.

Other medicines that those with RSD may take for symptoms are as is: (all meds vary from person to person)

Antidepressant

Anti-seizure (Neurontin,Topamax)

Muscle Relaxer

Sleeping Pill

Pain Killer...Narcotic or Non-Narcotic. This is strictly up to the patient and their wishes usually

Those are just the basic medicines. As time goes on, and the RSD may spread, it can affect internal organs, blood pressure, or any other bodily functions. So, it usually ends up meaning that we have to take other medicines to help with those problems also.

Some people are "lucky" enough that their RSD stays in only one area. I say "lucky" like that because anyone who has RSD suffers the same no matter where they have it....in just one area, or full body. We all suffer thru the pain. Just those who have it only in one limb or foot or hand can move around easier at times than someone who has it full body, depending on weather, stress, living conditions, Doctors, medicines, etc.

I didn't mean to make this so long and boring....but, trying to explain RSD isn't easy to do....especially in a short e-mail! lol

To make it somewhat short....RSD is very hard to prove, diagnose and make others believe due to it is almost an invisible disease. By invisible meaning unless you have it, no one else is going to believe you when you tell them how bad the pain feels. RSD, like any Chronic Pain, affects your body, your Mental conditions, your emotional conditions, your family life, the way your friends treat you....the works. It will change the way you live for the rest of your life.

Tonia

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

July 2, 2003

Jane,

For one, watch saying the S*rry word! Deb G will get ya for that one! lol....I know.....I was the first one she got!

Ok....this is better.

For 2....an EMG is a very painful test to begin with that tests your nerves to rule out any Neuropathy. This would be a different type of pain disorder they would be able to treat somewhat differently. I'm not exactly sure what the treatments are for this, whereas someone else in this group may know more....I actually think someone else may have Neuropathy along with the RSD in this group.

The MRI......let me think here (which is hard to do with these kids!) The MRI checks your muscles...to see if there is any tearing, any wasting away, etc.....

Now, the Neurontin. The Neurontin will help if you have any muscle spasms, burning pain and the like. Neurontin is actually only FDA approved for epilepsy, but has found to be useful for other disorders that have some of the same properties, as the spasms and burning pain.

There are other medicines that also helps besides Neurontin, as Topamax, Gabitril, and many others.

Other medicines that those with RSD may take for symptoms are as is: (all meds vary from person to person)

Antidepressant

Anti-seizure (Neurontin,Topamax)

Muscle Relaxer

Sleeping Pill

Pain Killer...Narcotic or Non-Narcotic. This is strictly up to the patient and their wishes usually

Those are just the basic medicines. As time goes on, and the RSD may spread, it can affect internal organs, blood pressure, or any other bodily functions. So, it usually ends up meaning that we have to take other medicines to help with those problems also.

Some people are "lucky" enough that their RSD stays in only one area. I say "lucky" like that because anyone who has RSD suffers the same no matter where they have it....in just one area, or full body. We all suffer thru the pain. Just those who have it only in one limb or foot or hand can move around easier at times than someone who has it full body, depending on weather, stress, living conditions, Doctors, medicines, etc.

I didn't mean to make this so long and boring....but, trying to explain RSD isn't easy to do....especially in a short e-mail! lol

To make it somewhat short....RSD is very hard to prove, diagnose and make others believe due to it is almost an invisible disease. By invisible meaning unless you have it, no one else is going to believe you when you tell them how bad the pain feels. RSD, like any Chronic Pain, affects your body, your Mental conditions, your emotional conditions, your family life, the way your friends treat you....the works. It will change the way you live for the rest of your life.

Tonia

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

July 4, 2003

Betsy,

If you don't have burning or muscle spasms I'm not sure why you would need Neurontin. I take it for burning and it helps a lot in that area. I haven't heard anyone talking about a spinal MRI. The EMG, yes, I had one done too. The physiatrist that did it is real swift. He said that he didn't think I had RSD because it hadn't spread in a year. Wonder where he got that idea in his head?! I told him the pain doctor said it was probably because of the blocks, that they can prevent spreading for awhile. I think it may be in my other foot now though. Ran into the rocking chair and all symptoms lead to nerve problems.

Hope you can get the help you need!

Love,

Question

Hi all,Well, had my first neuro appt. This was a big disappointment. I am really down about this whole thing.First, it took me 6 weeks to get the initial appt. I thought that was cruel, considering the extreme pain I was in at the time the appt. was made. It's not that I am limited by my insurance - the only limits I have are that if I use a Dr. out of network I only receive 65% instead of 80%. The trouble is, I am finding out, is that there are only a handful of neurologists in my area (a fairly large area, too). This particular group of 3 or 4 Dr.'s seem to be the 'first guard' here, I hear their names over and over. There are a couple of others, but I have no references about them. When I talk to my foot Dr., call insurance, talk to others with neuro problems, this Dr's name comes up over and over.ANyway, I go to my visit. Immediately, I don't feel comfortable with this Dr. - he used to be a local HMO Dr, and I recognize him from taking my son to him for migraines years ago. I only get perhaps 20 minutes with him, and just a verbal history and a pin prick test and BP test. (high - any wonder why?).He tells me he wants me to do three things - see a dermatologist for the skin, have a lumbar MRI, and have an EMG. The dermatologist and MRI I can get done right away - but why the damn lumbar MRI? Is this common? And get this, only HE does the EMG's and I cannot get one until - drum roll please - Aug. 21, about two months from now. GRRRRRRRRRRRRRRR! He said he also wants to give me an RX for Neutrontin. I proceed to ask questions - why the tests? To rule other things out, is my answer. Does that sound plausible to you? And I left the office, after having to STAND to get the MRI scheduled, which really hurt, and I finally asked to sit in one of the office chairs, I left without the RX. Which I really don't want to take anyway. I asked him what the diagnosis was, and he said once I have these tests done, I will be scheduled to see the pain Dr, and have blocks done. That's it. Nothing else.Ok, first question - anyone else have this experience? This will put me about four months into finding out what's wrong, THEN receive treatment. What the hell is the lumbar MRI for?? MRI's are *expensive*. Should I ask for the neurontin RX? DO I really want to take that? Remember, since I stopped treating my foot, it's been in MUCH less pain, and life has been a little better. Should I just stop persuing this problem with Dr.'s? Maybe mine has healed or is not really RSD? I was so angry and upset when I left his office. The reason the EMG is so far out is because he's going on vacation. I called insurance and asked for other neuros, and of course, this Dr. and his associates names came up again and again, with just two others outside of his. They are in the shadier side of town, immediately I get edgy. (I really don't know what to do anymore. I dont think my podiatrist who initiated all this will be at all sympathetic or helpful, and my family dr. doesn't even know about this.Sorry to ramble so long. This just sucks! Sorry.

July 4, 2003

Hi ,

I think you got the wrong person here about the Neurontin.....Think

perhaps it was Joann...I am on Gabitril and it helps a lot for the

shock pains and the creepy crawly feelings. Also the Ketamine salve

has also been helping in some pain relief. Hope you are having a

good day.

May the Lord Bless,

Betsy

> Betsy,

> If you don't have burning or muscle spasms I'm not sure why you

would need Neurontin. I take it for burning and it helps a lot in

that area. I haven't heard anyone talking about a spinal MRI. The

EMG, yes, I had one done too. The physiatrist that did it is real

swift. He said that he didn't think I had RSD because it hadn't

spread in a year. Wonder where he got that idea in his head?! I

told him the pain doctor said it was probably because of the blocks,

that they can prevent spreading for awhile. I think it may be in my

other foot now though. Ran into the rocking chair and all symptoms

lead to nerve problems.

> Hope you can get the help you need!

> Love,

>

> Question

>

> Hi all,

>

> Well, had my first neuro appt. This was a big disappointment. I

am

> really down about this whole thing.

>

> First, it took me 6 weeks to get the initial appt. I thought

that

> was cruel, considering the extreme pain I was in at the time the

> appt. was made. It's not that I am limited by my insurance - the

> only limits I have are that if I use a Dr. out of network I only

> receive 65% instead of 80%. The trouble is, I am finding out, is

that

> there are only a handful of neurologists in my area (a fairly

large

> area, too). This particular group of 3 or 4 Dr.'s seem to be

> the 'first guard' here, I hear their names over and over. There

are

> a couple of others, but I have no references about them. When I

talk

> to my foot Dr., call insurance, talk to others with neuro

problems,

> this Dr's name comes up over and over.

>

> ANyway, I go to my visit. Immediately, I don't feel comfortable

with

> this Dr. - he used to be a local HMO Dr, and I recognize him from

> taking my son to him for migraines years ago. I only get perhaps

20

> minutes with him, and just a verbal history and a pin prick test

and

> BP test. (high - any wonder why?).

>

> He tells me he wants me to do three things - see a dermatologist

for

> the skin, have a lumbar MRI, and have an EMG. The dermatologist

and

> MRI I can get done right away - but why the damn lumbar MRI? Is

this

> common? And get this, only HE does the EMG's and I cannot get one

> until - drum roll please - Aug. 21, about two months from now.

> GRRRRRRRRRRRRRRR!

>

> He said he also wants to give me an RX for Neutrontin. I proceed

to

> ask questions - why the tests? To rule other things out, is my

> answer. Does that sound plausible to you? And I left the

office,

> after having to STAND to get the MRI scheduled, which really

hurt,

> and I finally asked to sit in one of the office chairs, I left

> without the RX. Which I really don't want to take anyway. I asked

him

> what the diagnosis was, and he said once I have these tests done,

I

> will be scheduled to see the pain Dr, and have blocks done.

That's

> it. Nothing else.

>

> Ok, first question - anyone else have this experience? This will

put

> me about four months into finding out what's wrong, THEN receive

> treatment. What the hell is the lumbar MRI for?? MRI's are

> *expensive*. Should I ask for the neurontin RX? DO I really

want to

> take that? Remember, since I stopped treating my foot, it's been

in

> MUCH less pain, and life has been a little better. Should I just

stop

> persuing this problem with Dr.'s? Maybe mine has healed or is

not

> really RSD?

>

> I was so angry and upset when I left his office. The reason the

EMG

> is so far out is because he's going on vacation. I called

insurance

> and asked for other neuros, and of course, this Dr. and his

> associates names came up again and again, with just two others

> outside of his. They are in the shadier side of town, immediately

I

> get edgy. (

>

> I really don't know what to do anymore. I dont think my

podiatrist

> who initiated all this will be at all sympathetic or helpful, and

my

> family dr. doesn't even know about this.

>

> Sorry to ramble so long. This just sucks! Sorry.

>

July 5, 2003

> Betsy,

> . Ran into the rocking chair and all symptoms lead to nerve

problems.

>

\ Ran into the rocking chair and all symptoms lead to nerve problems.

Hi Guys,

I was walking into my sons room, already limping because my right

foot was in a flare up when my left foot started up.

It was dark and I lost my balance at this point falling into his big

wooden desk chair. It is a heavy antique wood chair with big arms.

Well, I have had 'that two' ankles like look on my left foot for a

few days and the pain is awful.

If it is not better tomorrow I may go to the doctors, or the ER.

Now of course my right foot is worse from limping on it catering to

my left, and naturally my back is hurting from the limping also.

So, if I am not around much, you will all know why.

Take care,

Deb

Deborah Genatossio

Debgena@...

July 5, 2003

Deb,

Why do we do these things to ourselves?!!!

Love

Re: Question

> Betsy,> . Ran into the rocking chair and all symptoms lead to nerve problems.> \ Ran into the rocking chair and all symptoms lead to nerve problems.Hi Guys,I was walking into my sons room, already limping because my right foot was in a flare up when my left foot started up.It was dark and I lost my balance at this point falling into his big wooden desk chair. It is a heavy antique wood chair with big arms.Well, I have had 'that two' ankles like look on my left foot for a few days and the pain is awful.If it is not better tomorrow I may go to the doctors, or the ER.Now of course my right foot is worse from limping on it catering to my left, and naturally my back is hurting from the limping also.So, if I am not around much, you will all know why. Take care,DebDeborah GenatossioDebgena@...

July 5, 2003

Deb,

Why do we do these things to ourselves?!!!

Love

Re: Question

> Betsy,> . Ran into the rocking chair and all symptoms lead to nerve problems.> \ Ran into the rocking chair and all symptoms lead to nerve problems.Hi Guys,I was walking into my sons room, already limping because my right foot was in a flare up when my left foot started up.It was dark and I lost my balance at this point falling into his big wooden desk chair. It is a heavy antique wood chair with big arms.Well, I have had 'that two' ankles like look on my left foot for a few days and the pain is awful.If it is not better tomorrow I may go to the doctors, or the ER.Now of course my right foot is worse from limping on it catering to my left, and naturally my back is hurting from the limping also.So, if I am not around much, you will all know why. Take care,DebDeborah GenatossioDebgena@...

July 5, 2003

Soor to hear you are having more problems Deb. Seems like with us if

it's not one thing it's another. I for sure understand about the

limping on one foot and getting a problem in the other leg or foot

and what all this can do to a persons back......it is like an

energizer bunny.....it just keeps going, and going.........and

going... Seriously, I hope you get to feeling better soon.

May the Lord Bless,

Betsy

> > Betsy,

> > . Ran into the rocking chair and all symptoms lead to nerve

> problems.

> >

> \ Ran into the rocking chair and all symptoms lead to nerve

problems.

> Hi Guys,

> I was walking into my sons room, already limping because my right

> foot was in a flare up when my left foot started up.

> It was dark and I lost my balance at this point falling into his

big

> wooden desk chair. It is a heavy antique wood chair with big arms.

> Well, I have had 'that two' ankles like look on my left foot for a

> few days and the pain is awful.

> If it is not better tomorrow I may go to the doctors, or the ER.

> Now of course my right foot is worse from limping on it catering

to

> my left, and naturally my back is hurting from the limping also.

> So, if I am not around much, you will all know why.

>

> Take care,

> Deb

> Deborah Genatossio

> Debgena@a...

July 5, 2003

Soor to hear you are having more problems Deb. Seems like with us if

it's not one thing it's another. I for sure understand about the

limping on one foot and getting a problem in the other leg or foot

and what all this can do to a persons back......it is like an

energizer bunny.....it just keeps going, and going.........and

going... Seriously, I hope you get to feeling better soon.

May the Lord Bless,

Betsy

> > Betsy,

> > . Ran into the rocking chair and all symptoms lead to nerve

> problems.

> >

> \ Ran into the rocking chair and all symptoms lead to nerve

problems.

> Hi Guys,

> I was walking into my sons room, already limping because my right

> foot was in a flare up when my left foot started up.

> It was dark and I lost my balance at this point falling into his

big

> wooden desk chair. It is a heavy antique wood chair with big arms.

> Well, I have had 'that two' ankles like look on my left foot for a

> few days and the pain is awful.

> If it is not better tomorrow I may go to the doctors, or the ER.

> Now of course my right foot is worse from limping on it catering

to

> my left, and naturally my back is hurting from the limping also.

> So, if I am not around much, you will all know why.

>

> Take care,

> Deb

> Deborah Genatossio

> Debgena@a...

July 22, 2003

> OK guys I need some input

> Hi ,

Maybe he used to much buv. when he bolused?

That is all I can think of.

I am not that familiar with

pumps, wish I could help you.

It doesn't seem like the heat

applied at therapy would cause this sensation. I hope today you are

feeling more normal. Let us know how you make out.

Take care

Hugs and a pain free minute,

Deborah (Deb)

Debgena@...(Deborah Genatossio)

Founder of RSD-CRPSofAmerica

E-mail us anytime @RSD-CRPS of America

July 22, 2003

> OK guys I need some input

> Hi ,

Maybe he used to much buv. when he bolused?

That is all I can think of.

I am not that familiar with

pumps, wish I could help you.

It doesn't seem like the heat

applied at therapy would cause this sensation. I hope today you are

feeling more normal. Let us know how you make out.

Take care

Hugs and a pain free minute,

Deborah (Deb)

Debgena@...(Deborah Genatossio)

Founder of RSD-CRPSofAmerica

E-mail us anytime @RSD-CRPS of America

July 22, 2003

Probably. If I'd thought about it....it sounded more like the signs of a panic attack than an allergic reaction. Thats what I get for being on here half asleep!

Guess I should learn how to wake up once in a while! lol

Hope it is doing better today!

Tonia

-- Re: question......being a nurse and all......YOU DON"T RECOGNIZE An ALLERGICREACTION TO A MED????????That is exactly what that sounds like!Go get checked out NOW!Tonia

July 22, 2003

Probably. If I'd thought about it....it sounded more like the signs of a panic attack than an allergic reaction. Thats what I get for being on here half asleep!

Guess I should learn how to wake up once in a while! lol

Hope it is doing better today!

Tonia

-- Re: question......being a nurse and all......YOU DON"T RECOGNIZE An ALLERGICREACTION TO A MED????????That is exactly what that sounds like!Go get checked out NOW!Tonia

July 22, 2003

Probably. If I'd thought about it....it sounded more like the signs of a panic attack than an allergic reaction. Thats what I get for being on here half asleep!

Guess I should learn how to wake up once in a while! lol

Hope it is doing better today!

Tonia

-- Re: question......being a nurse and all......YOU DON"T RECOGNIZE An ALLERGICREACTION TO A MED????????That is exactly what that sounds like!Go get checked out NOW!Tonia

July 8, 2004

Sharon, My tumor was not under the nipple, but it was a very large lump. I do not have any sensation in that breast at all. Everyone is different tho, it might just still have some who knows. Good luck with the surgery. Bless you

Jeana

July 8, 2004

Sharon, My tumor was not under the nipple, but it was a very large lump. I do not have any sensation in that breast at all. Everyone is different tho, it might just still have some who knows. Good luck with the surgery. Bless you

Jeana

July 8, 2004

Sharon, My tumor was not under the nipple, but it was a very large lump. I do not have any sensation in that breast at all. Everyone is different tho, it might just still have some who knows. Good luck with the surgery. Bless you

Jeana

July 8, 2004

Sharon,

I didn't have that problem so can't help. Maybe some of the other ladies can

help you with this. I will keep you in my prayers.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

Check out my breast cancer ornaments at:

http://www.geocities.com/chucky5741/bcornament.html

also check out my other ornaments and lots of nice gifts at:

http://www.cancerclub.com

question

> Hi ladies:

>

> My husband and I met with my surgeon yesterday and it looks like I

> will have surgery the week of July 26th. (I asked her if it was ok

> to wait until then because I'm supposed to teach a class from the

> 13th to the 21st and I didn't want to let my students down and she

> said fine.) She is going to do a lumpectomy and then we'll follow up

> with radiation. Depending on the nodes, there might also be chemo or

> hormone therapy. One unknown is whether she will be able to save my

> nipple, since the tumor is right under it. She's going to not take

> it in the initial surgery, but if the margins aren't clean she'll

> have to take it later. So here is my question. If I am able to keep

> my nipple, given that the area she's getting rid of is so close

> under the nipple, will I still have sensation in my nipple? Or will

> I be numb there from here on out? Has anyone else has this situation?

>

> Sharon

>

July 8, 2004