/pain specialists/TN/ from C

[Guest guest]

Dear ,

Hi. Sorry you're having a bad time. Well, this seems so familiar

to me, but I'm sure by now if you have read some of my posts, you have a sense

of how I feel about some doctors. The situation you talk about with your pain

specialist reminds me of the my last pain specialist, but the difference with

her was, she was nice in the beginning, then on a later examination she reacted

the same way you are describing the way your's acted the first time. I was

telling her about one of the questions that my lawyer was inquiring about that

had to do with " the 18 points test " trigger or tender, I forget what they call

them, but you probably know what I mean, and so anyway she proceeded to push

from top to bottom quickly, and asked even quicker, hurt here?, hurt here?,

hurt here?, I told her yes for each, ok, she said well if it hurts then you dont

have it. I'm like what? She had been telling me all along through the whole

process that I did have it. No to mention that

I have three other diagnosis' of it. She totally flipped the script, she was

also the same one that told me that she would not write a letter for me for

disability. Go figure. I have a few choice words for her at this point in time

and will be getting my records from her office when I have the chance. Well

needless to say later on, she left on maternity leave and never saw her again .

I saw one of the other physicians that were in this practice on my last visit.

It was my last time there. He wasn't that great either.

Maybe my feelings about doctors wouldn't be so negative if I weren't sick,

maybe I would like them better if i didn't have to be bothered with them.

Doctors aren't suppose to cause harm, thats the oath they take, many of them

abuse this rule. They cause emotional harm.

On another note. I was diagnosed with TN about 95 or so. I went with

excruciating pain for 6 months straight. It was thee worst pain I think I have

ever experienced. Shame on your doctor for not prescribing something for this.

The neurologist at that time gave me midrin and tegretol, the one good thing

about TN is that as she put it, it can go away just as sporadically as it starts

and she was right, thank god. How long have you had it? That surgery they do

numbs your face, because they cut the trigeminal nerve. C

lisae0608@... wrote:

I went to a pain specialist yesterday since my family doctor will not

order my pain meds any more and she will not order my meds for my trigeminal

neuralgia either she feels it is not her place, but the neurologist cant help me

so why go.Oh well here is what happened when i went to see this wonderful man

and I do mean that in the most sarcastic way possible, he walked in the room

never examined me, never layed a hand on me, looked over my old MRI flims, told

me i had a herniated disk in my back small but there and he could give me an

injection, no thank you!! Never mentioned the Fibro, not even once and then had

the adasity(spelling) to tell me that he did not think that I had TN, well at

that point I think I was going to get up and hit him, I said i know more about

this then you ever will i have done years of research ever since i was DX, I

expected help and got nothing, he told me to do aqua therapy. that was the only

answer he gave me, nothing else. I felt like

such a fool for

going there and even asking for help, like I had no right to want help or as if

i was just looking for meds, I just want somebody to help with the pain, enough

is enough. My family doctor wont help me anymore, my rheumo, waste of time, i

stopped going to neurologist b/c they say that there is nothing that they can do

for me, they recommened surgery, brain surgery to fix the TN no thank you i have

enough trouble.

He just made me feel so small about myself. Like i had no right to ask for help.

Oh well thank you all for listeneing.

-------------- Original message --------------

Hi Jennie,

If today is your birthday, then have a Happy Birthday!!!!

Debbie J

-- In Fibromyalgia_Support_Group , jenniesattic@...

wrote:

>

> Welcome !

>

> I've never heard anything about it eventually going away. I've

probably had

> it my whole life and I'm 55 today! EEEKKKK. LOL! I'll be

interested in hearing

> what others have to say. Some say there is a connection to CFS

and that does

> eventually go away so I'm wondering if that's what your mom was

referring

> to. In fact, some believe it's one and the same thing while

others don't. Still

> other believe there is a connection but it's not the same thing.

Confused

> yet? HeeHee.

>

> Welcome to our world!

> ~Jennie

>

>

>

[Guest guest]

I have had TN for 6 years now and got it post surgery for removal of a maxially

cyst and about 3 weeks later developed pain in my face, after several months

they decided that it was the TN lucky for me, well mine is atypical meaning that

it is there all of the time and i am never pain free, even on good days and they

are far and few between so I always have the burning and the stinging and oh yes

the jolts lets not forget them they are my ol time favorite of all LOL. I am on

tegretol and topamax for the TN and it does help the pain slightly but not

enough that i would even ever consider myself to be pain free in that area.

Every neurologist I have ever been to over the past 6 years tells me that there

is nothing else that they can do for me except to recommend surgery and i am not

going to have brain surgery and not have any guarentee that it will fix the

pain, especailly when all of my MRI dont show any problems in that region. and

all of the research that i have done over the years show that if you have pain

all of the time that surgery usually does not work well at all so i have decided

to not deal with surgery and just continue on the meds.

As for the fibro, I am finding that the majority of the pain is in my upper

arms, they feel like I have worked out for hours, drives me crazy, my back is

killing me, well it is more like my right hip and the pain goes down to my ankle

and into my toes and it is terrible to the point that i cant move. I cant stand

it. Having one problem area is one thing but then add the 2 others and it is

like give me a break already, I have had enough, especially when they cant fix

any of them. I always say that someone is trying to play a joke on me w/ all of

this stuff but then again this is definitly not even remotly funny.

well I have vented enough. I was on cymbalta and itdid help my back pain and i

was feeling better for a while and then i noticed some weight gain and then i

stopped it b/c that i was not going to go through, i had lost 65 pounds when i

went on the topamax years ago and hasve kept it off and am not going to gain it

back. Lyrica gain me nightmares where i woke up screaming so that was stopped so

now i am not on anything for the fibro.

i am going to see a new neuro in october so we will see what will happen, he is

going to be the 6th neurologist that i am going to see.

hang in there

-------------- Original message --------------

Dear ,

Hi. Sorry you're having a bad time. Well, this seems so familiar to me, but I'm

sure by now if you have read some of my posts, you have a sense of how I feel

about some doctors. The situation you talk about with your pain specialist

reminds me of the my last pain specialist, but the difference with her was, she

was nice in the beginning, then on a later examination she reacted the same way

you are describing the way your's acted the first time. I was telling her about

one of the questions that my lawyer was inquiring about that had to do with " the

18 points test " trigger or tender, I forget what they call them, but you

probably know what I mean, and so anyway she proceeded to push from top to

bottom quickly, and asked even quicker, hurt here?, hurt here?, hurt here?, I

told her yes for each, ok, she said well if it hurts then you dont have it. I'm

like what? She had been telling me all along through the whole process that I

did have it. No to mention that

I have three other diagnosis' of it. She totally flipped the script, she was

also the same one that told me that she would not write a letter for me for

disability. Go figure. I have a few choice words for her at this point in time

and will be getting my records from her office when I have the chance. Well

needless to say later on, she left on maternity leave and never saw her again .

I saw one of the other physicians that were in this practice on my last visit.

It was my last time there. He wasn't that great either.

Maybe my feelings about doctors wouldn't be so negative if I weren't sick, maybe

I would like them better if i didn't have to be bothered with them. Doctors

aren't suppose to cause harm, thats the oath they take, many of them abuse this

rule. They cause emotional harm.

On another note. I was diagnosed with TN about 95 or so. I went with

excruciating pain for 6 months straight. It was thee worst pain I think I have

ever experienced. Shame on your doctor for not prescribing something for this.

The neurologist at that time gave me midrin and tegretol, the one good thing

about TN is that as she put it, it can go away just as sporadically as it starts

and she was right, thank god. How long have you had it? That surgery they do

numbs your face, because they cut the trigeminal nerve. C

lisae0608@... wrote:

I went to a pain specialist yesterday since my family doctor will not order my

pain meds any more and she will not order my meds for my trigeminal neuralgia

either she feels it is not her place, but the neurologist cant help me so why

go.Oh well here is what happened when i went to see this wonderful man and I do

mean that in the most sarcastic way possible, he walked in the room never

examined me, never layed a hand on me, looked over my old MRI flims, told me i

had a herniated disk in my back small but there and he could give me an

injection, no thank you!! Never mentioned the Fibro, not even once and then had

the adasity(spelling) to tell me that he did not think that I had TN, well at

that point I think I was going to get up and hit him, I said i know more about

this then you ever will i have done years of research ever since i was DX, I

expected help and got nothing, he told me to do aqua therapy. that was the only

answer he gave me, nothing else. I felt like

such a fool for

going there and even asking for help, like I had no right to want help or as if

i was just looking for meds, I just want somebody to help with the pain, enough

is enough. My family doctor wont help me anymore, my rheumo, waste of time, i

stopped going to neurologist b/c they say that there is nothing that they can do

for me, they recommened surgery, brain surgery to fix the TN no thank you i have

enough trouble.

He just made me feel so small about myself. Like i had no right to ask for help.

Oh well thank you all for listeneing.

-------------- Original message --------------

Hi Jennie,

If today is your birthday, then have a Happy Birthday!!!!

Debbie J

-- In Fibromyalgia_Support_Group , jenniesattic@...

wrote:

>

> Welcome !

>

> I've never heard anything about it eventually going away. I've

probably had

> it my whole life and I'm 55 today! EEEKKKK. LOL! I'll be

interested in hearing

> what others have to say. Some say there is a connection to CFS

and that does

> eventually go away so I'm wondering if that's what your mom was

referring

> to. In fact, some believe it's one and the same thing while

others don't. Still

> other believe there is a connection but it's not the same thing.

Confused

> yet? HeeHee.

>

> Welcome to our world!

> ~Jennie

>

>

>

[Guest guest]

,

Your case of TN sounds way worse then what I had. I can remember the pain

would come on real sudden and stabbing, that intensity might last for several

minutes. I couldnt talk, I couldnt think, I couldnt open my mouth, just close my

eyes and way for this horrible thing to stop. Then I think in that same year my

mom and dad came to visit and my dad had this hand held device that was some

kind of nerve stimulator, the doctors had given it to him when he developed

bell's palsy (that nerve condition that develops in the face and draws one side

down, it drew one side of his mouth down) anyway, I was trying it out just to be

trying it out. Strangely enough and I don't know if it was connected or not,

went away after they went back home. So i don't know why it went away, but was

glad it was gone.

Yes I agree with you, the surgery sounds serious. I wouldn't be so gung ho on

it either. Hopefully your new neuro can help you. I almost took topamax, maybe I

should of, I could stand to lose the weight, well take care, wishing you luck

with new neuro! C

lisae0608@... wrote:

I have had TN for 6 years now and got it post surgery for removal of a

maxially cyst and about 3 weeks later developed pain in my face, after several

months they decided that it was the TN lucky for me, well mine is atypical

meaning that it is there all of the time and i am never pain free, even on good

days and they are far and few between so I always have the burning and the

stinging and oh yes the jolts lets not forget them they are my ol time favorite

of all LOL. I am on tegretol and topamax for the TN and it does help the pain

slightly but not enough that i would even ever consider myself to be pain free

in that area.

Every neurologist I have ever been to over the past 6 years tells me that there

is nothing else that they can do for me except to recommend surgery and i am not

going to have brain surgery and not have any guarentee that it will fix the

pain, especailly when all of my MRI dont show any problems in that region. and

all of the research that i have done over the years show that if you have pain

all of the time that surgery usually does not work well at all so i have decided

to not deal with surgery and just continue on the meds.

As for the fibro, I am finding that the majority of the pain is in my upper

arms, they feel like I have worked out for hours, drives me crazy, my back is

killing me, well it is more like my right hip and the pain goes down to my ankle

and into my toes and it is terrible to the point that i cant move. I cant stand

it. Having one problem area is one thing but then add the 2 others and it is

like give me a break already, I have had enough, especially when they cant fix

any of them. I always say that someone is trying to play a joke on me w/ all of

this stuff but then again this is definitly not even remotly funny.

well I have vented enough. I was on cymbalta and itdid help my back pain and i

was feeling better for a while and then i noticed some weight gain and then i

stopped it b/c that i was not going to go through, i had lost 65 pounds when i

went on the topamax years ago and hasve kept it off and am not going to gain it

back. Lyrica gain me nightmares where i woke up screaming so that was stopped so

now i am not on anything for the fibro.

i am going to see a new neuro in october so we will see what will happen, he is

going to be the 6th neurologist that i am going to see.

hang in there

-------------- Original message --------------

From: claudette hudson

Dear ,

Hi. Sorry you're having a bad time. Well, this seems so familiar to me, but I'm

sure by now if you have read some of my posts, you have a sense of how I feel

about some doctors. The situation you talk about with your pain specialist

reminds me of the my last pain specialist, but the difference with her was, she

was nice in the beginning, then on a later examination she reacted the same way

you are describing the way your's acted the first time. I was telling her about

one of the questions that my lawyer was inquiring about that had to do with " the

18 points test " trigger or tender, I forget what they call them, but you

probably know what I mean, and so anyway she proceeded to push from top to

bottom quickly, and asked even quicker, hurt here?, hurt here?, hurt here?, I

told her yes for each, ok, she said well if it hurts then you dont have it. I'm

like what? She had been telling me all along through the whole process that I

did have it. No to mention that

I have three other diagnosis' of it. She totally flipped the script, she was

also the same one that told me that she would not write a letter for me for

disability. Go figure. I have a few choice words for her at this point in time

and will be getting my records from her office when I have the chance. Well

needless to say later on, she left on maternity leave and never saw her again .

I saw one of the other physicians that were in this practice on my last visit.

It was my last time there. He wasn't that great either.

Maybe my feelings about doctors wouldn't be so negative if I weren't sick, maybe

I would like them better if i didn't have to be bothered with them. Doctors

aren't suppose to cause harm, thats the oath they take, many of them abuse this

rule. They cause emotional harm.

On another note. I was diagnosed with TN about 95 or so. I went with

excruciating pain for 6 months straight. It was thee worst pain I think I have

ever experienced. Shame on your doctor for not prescribing something for this.

The neurologist at that time gave me midrin and tegretol, the one good thing

about TN is that as she put it, it can go away just as sporadically as it starts

and she was right, thank god. How long have you had it? That surgery they do

numbs your face, because they cut the trigeminal nerve. C

lisae0608@... wrote:

I went to a pain specialist yesterday since my family doctor will not order my

pain meds any more and she will not order my meds for my trigeminal neuralgia

either she feels it is not her place, but the neurologist cant help me so why

go.Oh well here is what happened when i went to see this wonderful man and I do

mean that in the most sarcastic way possible, he walked in the room never

examined me, never layed a hand on me, looked over my old MRI flims, told me i

had a herniated disk in my back small but there and he could give me an

injection, no thank you!! Never mentioned the Fibro, not even once and then had

the adasity(spelling) to tell me that he did not think that I had TN, well at

that point I think I was going to get up and hit him, I said i know more about

this then you ever will i have done years of research ever since i was DX, I

expected help and got nothing, he told me to do aqua therapy. that was the only

answer he gave me, nothing else. I felt like

such a fool for

going there and even asking for help, like I had no right to want help or as if

i was just looking for meds, I just want somebody to help with the pain, enough

is enough. My family doctor wont help me anymore, my rheumo, waste of time, i

stopped going to neurologist b/c they say that there is nothing that they can do

for me, they recommened surgery, brain surgery to fix the TN no thank you i have

enough trouble.

He just made me feel so small about myself. Like i had no right to ask for help.

Oh well thank you all for listeneing.

-------------- Original message --------------

From: " deebs87 "

Hi Jennie,

If today is your birthday, then have a Happy Birthday!!!!

Debbie J

-- In Fibromyalgia_Support_Group , jenniesattic@...

wrote:

>

> Welcome !

>

> I've never heard anything about it eventually going away. I've

probably had

> it my whole life and I'm 55 today! EEEKKKK. LOL! I'll be

interested in hearing

> what others have to say. Some say there is a connection to CFS

and that does

> eventually go away so I'm wondering if that's what your mom was

referring

> to. In fact, some believe it's one and the same thing while

others don't. Still

> other believe there is a connection but it's not the same thing.

Confused

> yet? HeeHee.

>

> Welcome to our world!

> ~Jennie

>

>

>