Re: I need to vent!! very long!!

[Guest guest]

Bert - Honest your not alone, I hate doctors, labs, nurse practioners that

think they

know everything, but don't even know what NASH is. Honey it's the same for

all of us I just recently started with the bad neck, shoulder, arm hell the

all over pain. There isn't anything you can really take for the pain that

dosen't hurt your liver. I am

as disgusted as you are. For awhile I felt pretty good, then hit me all at

once as

you know wam!!!! I hope you feel better just by letting it all out, just

remember we all care about you and want you to VENT!!!!!! you sure will feel

better. Hug's, Lou

mhe3053904@...

[Guest guest]

Bert:

You have every right to vent. You are always there for us. Now let it be

your turn. I know it is very frustrating with the docs. Even though I use

to work for them I know they talk in circles and do not always know what is

wrong. It is so hard for the poor patients all they want to know is what is

wrong with them. Docs will not say they dont know and send you somewhere

else that would know what is wrong. The cost of co-pays and rx's will ruin

a budget. I wish I lived close to you and could help you out, but CA is a

little far.

I will keep you in my prayers and thoughts, as I know you will find the

answer to what is wrong and be able to at least control it.

Glo

>From: sunshinedotson@...

>Reply-

>liver problems

>Subject: [ ] I need to vent!! very long!!

>Date: Sat, 26 Jan 2002 21:15:50 EST

>

>

>Hi There Everyone! Hope you all are doing good!!

>I have to vent right now.....(my turn)

>Sorry can't hold it in any longer!!

>

>I am just so tired of these ups and owns I could just scream!! I did go to

>the doctors last Wed. (PCP)

>Liver enzymes are back up to 83, from 62. AST's

>(i think he said) is up to 65 from 42? Slowly creeping up! I get these

>darn

>things mixed up.....LFT's, ALT's, AST's, LDL's, LDC's......this crap, is

>really starting to annoy me so much I feel like just throwing in the

>towel!!

>I know that the LDL/LDC is for Cholestrol.

>but still get them confused!! I do have high Cholestrol, but doc. won't

>give

>me anything, bec. of my liver. Still can't take anything for pain either.

>

>I am off the Acephix. It wasn't needed after-all. Four bottles of that

>running through my liver for nothing!! Off the pred. for good right now.

>Still on the IBS med. and Amitrip.(anti-depressant) and of course my

>snythroid. PCP says, he is concerned with the fatty liver issue, bec. I do

>not drink, and i am not over-weight. But he is not concerned about the

>cysts

>on my kidney or liver. So he says I will be monitored for 3 months.

>Blood-work done once a month to see what the liver does! Ok, then I said,

>how can you be sure about the cysts? He says well, sometimes the kidneys

>just develop cysts....(i can't explain it the way he did)

>

>I said, OK, how can you be sure the cyst on my liver is benign? He said he

>trusts the scan. I said, well, I am not comfortable with that!! His

>reply??

> " I am not going to be satisfied until I have the biopsy " I of course got

>defensive and said, you know doc? I can't afford for things to go

>OVER-looked anymore!! I have been sick way too long and I have had too

>many

>incompetent doctors!! I will not be strung along anymore! I have the pain

>back, and the fatigue is awful!! I have a LIFE and want to LIVE

>it!!!!!!!!!!

>

>He agreed and apologized, if he had made me feel like nothing is getting

>done

>or DX's. He said, lets see what the gastro says. Then in his next breath,

>he says, but, I can almost guarantee that he won't do the biopsy.....I was

>crushed! I want some definite answers. I know biopsies aren't always

>reliable, but heck, it sure is better than all this off-on....

>off-on....meds. and just blood-work, along with the

>GUESS-work!! It really is driving me NUTS!!

>

>I was supposed to see the gastro the next day(thurs.)

>but, Rob couldn't get home to take care of . I normally take with

>me everywhere, but he is sick and very cranky, so I thought trying to take

>him, would have been disastrous!! So I canceled it. Did I make another

>appt..?? No!!!! Am I going to?? Don't know.

>The way I feel right now, I don't care anymore!!

>

>Maybe will request or DEMAND! another GI doc.

>Also.....all these co-pays and money for prescriptions, is really putting a

>burden on us. I only want necessary appts. and scripts. Not doing this

>dumb

>experimenting s**t anymore!! So at this point, I am lost. BTW, with

>Fibromyalgia, it's a clinical DX's for one thing. Not a PROVEN illness.

>

>They have no clue was causes it or how to control it. Only that some

>research has showed, that

>anti-depressants help. Researchers also say, that there are 18 areas on

>the

>body that usually are affected by Fibromyalgia. 2 points behind the neck,

>2 points on the shoulder blade area(both sides),

>just above the elbows(or below). 2 points in the hip area on both sides;

>and

>the knees and ankles.

>

>A lot are in the joint areas. Ok, so he does the test on me. The test??

>is

>only, that he pushes on these areas in a circular motion, with some

>pressure.

> Every area on my left side is EXTREMELY painful! almost crippling me to

>the

>touch(especially the hip and shoulder)

>I have a few on the right, but not near as bad. So I have 12 out of the 18

>areas that are painful to the touch! So he CLINICALLY DX's me with

>Fibromyalgia!

>(you are clinically DX if you have 11 out of the 18) Thats good news

>right?

>I finally have 1 answer to most of my pain.

>

>Until he tells me that once I have this, it's for LIFE!

>He said that it can lay dormant in our bodies for a long time, (does this

>mean it could be hereditary?....he said no/well, maybe.) He goes on to

>tell

>me that a sudden tramatic experience or long, long periods of stress can

>trigger it. But there is no going back to the way I

>was.....................I want to cry.....

>

>I did get all that info. he told me, confirmed by some research I did on

>Fibro. I asked him about it possibly being a neurological problem? He

>said

>no. I am just beside myself, I don't know what to do......I am trying so

>hard to keep my spirits up and stay positive.

>

>But I really am just so sad, and I have been crying so much!!!! On top of

>it

>all, I am having a flare-up with something that is making my face swell

>with

>turning red and blotchy, along with severe itching. But the itching is all

>over my body too. I had a similar incident in July of 2000.

>

>PCP at that time(the one who called me a hypocondricat!) said I was just

>having an allergic reaction to something. Sent me to a Dermatologist.

>He gave me a steriod shot and some creams. It went away, but I never found

>out what happened! Now it's happening again. Calling PCP on Monday. I

>thought it might be cia.....but I really think it's related to my

>thyroid, bec. I remember, when it happened the last time; my thyroid was

>way

>off and had to be increased. And it never happened again, until now.

>

>So I am a mess!! In constant pain and awful, awful fatigue. Now the face

>thing, with the body itching.

>(didn't have the body itching though, in 2000.)

>I just want to feel somewhat human......

>I want to be able to stay up after being awake for only 2/3 hours. I want

>to

>walk up the stairs without my legs hurting. I want to play chase with my

>children outside. I want a clean house for my family on a REGULAR basis!!

>instead of once in a while.......

>keeping up on laundry would be nice!!

>Sitting at this computer, is becoming unbearable too!!

>

>BUT most of all????......I don't want this pain........I am so tired of it.

>I am back to crawling out of bed in the mornings. After a while I do

>loosen

>up. Seems like, I am stiff as a board, and if I dare move, I cause awful

>pain everywhere!! With the Amitrip., I have noticed a decrease in pain,

>but

>this is just getting to be too much. I am 34......I want to curl up and

>cry

>or die!!

>

>Anger is becoming worse too. I am starting to have bad fits when I happen

>to

>move the wrong way, (like just bending over)!! and I cause the pain thats

>already there to be worse!! It's a hit and miss sometimes. I can bend

>over

>fine one day, and not the other. Stretch out my legs one day, but not

>another! I am just so fed up!

>

>So if this is never going away, I will have to stay on anti-depressants for

>LIFE!! Isn't that gonna hurt my liver???????? and therefore creating more

>issues???

>

>I am thinking about experimenting. Going off the Amitrip. I want to see

>if

>all the pain comes back.

>To the crippling point I mean! I have to be sure of these DX's. I am

>getting to where I don't trust my PCP now!!!! And I spoke so highly of him

>before.......

>

>I don't trust anyone, right now!! I feel like a darn lab rat, just waiting

>to die, from too many experiments and tests that aren't proving ANYTHING!!!

>I am just LOST!!!!!!!! Why me?? I have been asking myself???

>What did I do to deserve this??? I have kids that are too small to

>understand, and teenagers that are failing their classes!! Just a trip to

>the E.R. with my 7 yr. old

>was unbearable!! Keeping up the household/bills/kids/cars/constant teacher

>conferences!!!!! and more and more...too much to tell!!

>

>Rob is gone more and more all the time, I even accused him of having an

>affair!! I don't really believe he is, (i think).

>He doesn't go with me to doctors appts. anymore.

>Just asking him to watch , so I can go to the doc's. I always get the

>big

>sigh.......then he'll say...

>(ok, I'll try!!) He always, (without fail) acts like I am intruding in his

>BUSY work life and I should understand that he is just too busy!!

>

>Well, I do to a point! I have no one here with me and feel so alone!! You

>people on this group are all I have. I do have 2 friends that live 3 and 4

>hours away. My long distance bill was sky rocketing, so I can't talk with

>them much at all. Only one friend has a computer, and we do e-mail each

>other. But she has 2 small kids at at home and runs a daycare.....so not

>much time for friends.....

>So here I am......with you all......I am so lucky and happy to have you all

>in my life!!!!

>Thanks for letting me cry.......

>HUGS....

>Bert. /the lonely lab rat!!

_________________________________________________________________

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[Guest guest]

Bert! hang in there, so sorry to hear you feel so bad!I know the pain and the

expense of the co-pays,I hurt so bad I wonder if its worth it too! And I feel

like I am ninety five years old, not forty seven, I feel like I need a cane

or a walker to get me around, my wrist hurt to even type! I'm scared over the

outcome of my last pred. drop, will I be crippled? I go in feburuary, and if

LFT is good I am done with pred. The pred. is a harsh drug a life saver but a

killer, My dr. had to finally give me a pain shot never before have I had to

have one. So hang in there, I pray it will get better for us all.

Gloria in Mi.

[Guest guest]

My dear Bert i am so glad that you have been able to get every thing off your chest. Cry as much as you need it's exhausting in it's self to let go like that but you will feel the benifit for it later.

What is the reason for not doing a biopsy ? Here in the UK if you ask for somthing to be done it normaly gets done, we have to go on a waiting list which can be quite long but for the liver it is generaly seen to very quick. I have even found that out since my stroke.

D'ont stop taking the meds I have tried that it did'nt get me anywere just back in hospital feeling a right idiot and when my family found out what I had done they were so hurt it took a long time to get our relationship back to normal. And one more thing you are to precious to lose you havent done what you were put on this earth to do yet. Please take one day at a time if that is to hard then take one hour at a time.

Sorry about all this rubish but you can delete me. ((( hugs))) Jeanette UK AIH dx1998 Cirrhosis dx2001

sunshinedotson@... wrote: Hi There Everyone! Hope you all are doing good!!I have to vent right now.....(my turn)Sorry can't hold it in any longer!!I am just so tired of these ups and owns I could just scream!! I did go to the doctors last Wed. (PCP)Liver enzymes are back up to 83, from 62. AST's (i think he said) is up to 65 from 42? Slowly creeping up! I get these darn things mixed up.....LFT's, ALT's, AST's, LDL's, LDC's......this crap, is really starting to annoy me so much I feel like just throwing in the towel!! I know that the LDL/LDC is for Cholestrol. but still get them confused!! I do have high Cholestrol, but doc. won't give me anything, bec. of my liver. Still can't take anything for pain either.I am off the Acephix. It wasn't needed after-all. Four bottles of that running through my liver for nothing!! Off the pred. for good right now. Still on the IBS med. and Amitrip.(anti-depressant) and of course my snythroid. PCP says, he is concerned with the fatty liver issue, bec. I do not drink, and i am not over-weight. But he is not concerned about the cysts on my kidney or liver. So he says I will be monitored for 3 months. Blood-work done once a month to see what the liver does! Ok, then I said, how can you be sure about the cysts? He says well, sometimes the kidneys just develop cysts....(i can't explain it the way he did)I said, OK, how can you be sure the cyst on my liver is benign? He said he trusts the scan. I said, well, I am not comfortable with that!! His reply?? "I am not going to be satisfied until I have the biopsy" I of course got defensive and said, you know doc? I can't afford for things to go OVER-looked anymore!! I have been sick way too long and I have had too many incompetent doctors!! I will not be strung along anymore! I have the pain back, and the fatigue is awful!! I have a LIFE and want to LIVE it!!!!!!!!!!He agreed and apologized, if he had made me feel like nothing is getting done or DX's. He said, lets see what the gastro says. Then in his next breath, he says, but, I can almost guarantee that he won't do the biopsy.....I was crushed! I want some definite answers. I know biopsies aren't always reliable, but heck, it sure is better than all this off-on....off-on....meds. and just blood-work, along with the GUESS-work!! It really is driving me NUTS!!I was supposed to see the gastro the next day(thurs.)but, Rob couldn't get home to take care of . I normally take with me everywhere, but he is sick and very cranky, so I thought trying to take him, would have been disastrous!! So I canceled it. Did I make another appt..?? No!!!! Am I going to?? Don't know.The way I feel right now, I don't care anymore!!Maybe will request or DEMAND! another GI doc.Also.....all these co-pays and money for prescriptions, is really putting a burden on us. I only want necessary appts. and scripts. Not doing this dumb experimenting s**t anymore!! So at this point, I am lost. BTW, with Fibromyalgia, it's a clinical DX's for one thing. Not a PROVEN illness. They have no clue was causes it or how to control it. Only that some research has showed, that anti-depressants help. Researchers also say, that there are 18 areas on the body that usually are affected by Fibromyalgia. 2 points behind the neck,2 points on the shoulder blade area(both sides), just above the elbows(or below). 2 points in the hip area on both sides; and the knees and ankles.A lot are in the joint areas. Ok, so he does the test on me. The test?? is only, that he pushes on these areas in a circular motion, with some pressure. Every area on my left side is EXTREMELY painful! almost crippling me to the touch(especially the hip and shoulder)I have a few on the right, but not near as bad. So I have 12 out of the 18 areas that are painful to the touch! So he CLINICALLY DX's me with Fibromyalgia! (you are clinically DX if you have 11 out of the 18) Thats good news right? I finally have 1 answer to most of my pain. Until he tells me that once I have this, it's for LIFE!He said that it can lay dormant in our bodies for a long time, (does this mean it could be hereditary?....he said no/well, maybe.) He goes on to tell me that a sudden tramatic experience or long, long periods of stress can trigger it. But there is no going back to the way I was.....................I want to cry.....I did get all that info. he told me, confirmed by some research I did on Fibro. I asked him about it possibly being a neurological problem? He said no. I am just beside myself, I don't know what to do......I am trying so hard to keep my spirits up and stay positive.But I really am just so sad, and I have been crying so much!!!! On top of it all, I am having a flare-up with something that is making my face swell with turning red and blotchy, along with severe itching. But the itching is all over my body too. I had a similar incident in July of 2000.PCP at that time(the one who called me a hypocondricat!) said I was just having an allergic reaction to something. Sent me to a Dermatologist.He gave me a steriod shot and some creams. It went away, but I never found out what happened! Now it's happening again. Calling PCP on Monday. I thought it might be cia.....but I really think it's related to my thyroid, bec. I remember, when it happened the last time; my thyroid was way off and had to be increased. And it never happened again, until now.So I am a mess!! In constant pain and awful, awful fatigue. Now the face thing, with the body itching.(didn't have the body itching though, in 2000.)I just want to feel somewhat human......I want to be able to stay up after being awake for only 2/3 hours. I want to walk up the stairs without my legs hurting. I want to play chase with my children outside. I want a clean house for my family on a REGULAR basis!! instead of once in a while.......keeping up on laundry would be nice!!Sitting at this computer, is becoming unbearable too!!BUT most of all????......I don't want this pain........I am so tired of it. I am back to crawling out of bed in the mornings. After a while I do loosen up. Seems like, I am stiff as a board, and if I dare move, I cause awful pain everywhere!! With the Amitrip., I have noticed a decrease in pain, but this is just getting to be too much. I am 34......I want to curl up and cry or die!!Anger is becoming worse too. I am starting to have bad fits when I happen to move the wrong way, (like just bending over)!! and I cause the pain thats already there to be worse!! It's a hit and miss sometimes. I can bend over fine one day, and not the other. Stretch out my legs one day, but not another! I am just so fed up!So if this is never going away, I will have to stay on anti-depressants for LIFE!! Isn't that gonna hurt my liver???????? and therefore creating more issues???I am thinking about experimenting. Going off the Amitrip. I want to see if all the pain comes back.To the crippling point I mean! I have to be sure of these DX's. I am getting to where I don't trust my PCP now!!!! And I spoke so highly of him before.......I don't trust anyone, right now!! I feel like a darn lab rat, just waiting to die, from too many experiments and tests that aren't proving ANYTHING!!! I am just LOST!!!!!!!! Why me?? I have been asking myself???What did I do to deserve this??? I have kids that are too small to understand, and teenagers that are failing their classes!! Just a trip to the E.R. with my 7 yr. oldwas unbearable!! Keeping up the household/bills/kids/cars/constant teacher conferences!!!!! and more and more...too much to tell!!Rob is gone more and more all the time, I even accused him of having an affair!! I don't really believe he is, (i think). He doesn't go with me to doctors appts. anymore. Just asking him to watch , so I can go to the doc's. I always get the big sigh.......then he'll say...(ok, I'll try!!) He always, (without fail) acts like I am intruding in his BUSY work life and I should understand that he is just too busy!! Well, I do to a point! I have no one here with me and feel so alone!! You people on this group are all I have. I do have 2 friends that live 3 and 4 hours away. My long distance bill was sky rocketing, so I can't talk with them much at all. Only one friend has a computer, and we do e-mail each other. But she has 2 small kids at at home and runs a daycare.....so not much time for friends.....So here I am......with you all......I am so lucky and happy to have you all in my life!!!! Thanks for letting me cry.......HUGS....Bert. /the lonely lab rat!!

[Guest guest]

Bert,

Feel free to vent any time. If you can't vent here,

where are you going to vent?

Please do not experiment with your medication by going

off of it. That is very dangerous. Hang in there.

Jeanette is right that you could end up in a worse

condition and in even more pain. DON'T DO IT! (That

was an intentional shout, by the way)

Call tomorrow and make a new appointment with your

gastro. Then make arrangements for a babysitter at the

same time; try the next door neighbor or someone at

your church. There is someone out there who will watch

(safely) for you while you are at the doctor.

I am not married so you may want to ignore the

following. Send the kids to the movies or to their

friends' house and then sit down and talk seriously

with your husband about how you feel - the fear that

you have, the frustrations that you are feeling, the

pain that you have been hiding from him, and the

feelings of distrust you have in your doctor, and your

feelings of dealing with all of this alone. From all

that you have written about your husband, he sounds

like a guy who is very busy, but also a guy that loves

you a great deal. Ask him to help you find the answers

to your medical concerns. I am sure that he has no

idea the amount of pain and frustration that you have

been dealing with alone.

I understand perfectly the amount of strain that

medications, doctors' visits, etc. has on the budget.

That is also adding to your stress.

You want answers to so many issues that they have

become overbearing. Put some goals on paper and then

prioritize them. What answers do you want the most?

Then, set up a plan (with or without your husband) to

find those answers.

Disregard any of this rambling that you wish, but know

that I am concerned about you (all of us here are

concerned about you) and want you to find some peace.

Prayers come your way today and always.

__________________________________________________

[Guest guest]

Bert,

Sometimes all we can to is vent...so have at it! I know you are so

frustrated...with illnesses like AIH the docs do make you go thru a

lot of hoops and still dont always have the answer.

Is there anything to keep you from seeing a different gastro? I am on

my second one. Got referred to #2 by my PCP after feeling totally

abandoned by the 1st one. The one I am seeing now is great about

explaining things..what he wants to do as well as not and most

importantly WHY!

Don't try to doctor yourself...you dont know what kind of consequences

that can have. Hang in there...vent as often as you can..and be pushy

with the doc about getting on with the program. I am kind of puzzled

about what you are being told you may have without benefit of a

biopsy. If I recall, before the idea of AIH was ever brought up, the

1st doc mentioned NASH (fatty liver) and it seems the only way to

diagnose that was with biopsy. They opted to wait and see if my lft's

returned to normal first. My doc (#2) diagnosed AIH based on positive

antibodies AND immediate response to prednisone, only did the biopsy

later to be sure no other diseases or problems were present.

nne

>

> Hi There Everyone! Hope you all are doing good!!

> I have to vent right now.....(my turn)

> Sorry can't hold it in any longer!!

>

> I am just so tired of these ups and owns I could just scream!! I

did go to

> the doctors last Wed. (PCP)

> Liver enzymes are back up to 83, from 62. AST's

> (i think he said) is up to 65 from 42? Slowly creeping up! I get

these darn

> things mixed up.....LFT's, ALT's, AST's, LDL's, LDC's......this

crap, is

> really starting to annoy me so much I feel like just throwing in the

towel!!

> I know that the LDL/LDC is for Cholestrol.

> but still get them confused!! I do have high Cholestrol, but doc.

won't give

> me anything, bec. of my liver. Still can't take anything for pain

either.

>

> I am off the Acephix. It wasn't needed after-all. Four bottles

of that

> running through my liver for nothing!! Off the pred. for good right

now.

> Still on the IBS med. and Amitrip.(anti-depressant) and of course my

> snythroid. PCP says, he is concerned with the fatty liver issue,

bec. I do

> not drink, and i am not over-weight. But he is not concerned about

the cysts

> on my kidney or liver. So he says I will be monitored for 3 months.

> Blood-work done once a month to see what the liver does! Ok, then I

said,

> how can you be sure about the cysts? He says well, sometimes the

kidneys

> just develop cysts....(i can't explain it the way he did)

>

> I said, OK, how can you be sure the cyst on my liver is benign? He

said he

> trusts the scan. I said, well, I am not comfortable with that!!

His reply??

> " I am not going to be satisfied until I have the biopsy " I of

course got

> defensive and said, you know doc? I can't afford for things to go

> OVER-looked anymore!! I have been sick way too long and I have had

too many

> incompetent doctors!! I will not be strung along anymore! I have

the pain

> back, and the fatigue is awful!! I have a LIFE and want to LIVE

it!!!!!!!!!!

>

> He agreed and apologized, if he had made me feel like nothing is

getting done

> or DX's. He said, lets see what the gastro says. Then in his next

breath,

> he says, but, I can almost guarantee that he won't do the

biopsy.....I was

> crushed! I want some definite answers. I know biopsies aren't always

> reliable, but heck, it sure is better than all this off-on....

> off-on....meds. and just blood-work, along with the

> GUESS-work!! It really is driving me NUTS!!

>

> I was supposed to see the gastro the next day(thurs.)

> but, Rob couldn't get home to take care of . I normally take

with

> me everywhere, but he is sick and very cranky, so I thought trying

to take

> him, would have been disastrous!! So I canceled it. Did I make

another

> appt..?? No!!!! Am I going to?? Don't know.

> The way I feel right now, I don't care anymore!!

>

> Maybe will request or DEMAND! another GI doc.

> Also.....all these co-pays and money for prescriptions, is really

putting a

> burden on us. I only want necessary appts. and scripts. Not doing

this dumb

> experimenting s**t anymore!! So at this point, I am lost. BTW, with

> Fibromyalgia, it's a clinical DX's for one thing. Not a PROVEN

illness.

>

> They have no clue was causes it or how to control it. Only that some

> research has showed, that

> anti-depressants help. Researchers also say, that there are 18

areas on the

> body that usually are affected by Fibromyalgia. 2 points behind the

neck,

> 2 points on the shoulder blade area(both sides),

> just above the elbows(or below). 2 points in the hip area on both

sides; and

> the knees and ankles.

>

> A lot are in the joint areas. Ok, so he does the test on me. The

test?? is

> only, that he pushes on these areas in a circular motion, with some

pressure.

> Every area on my left side is EXTREMELY painful! almost crippling

me to the

> touch(especially the hip and shoulder)

> I have a few on the right, but not near as bad. So I have 12 out of

the 18

> areas that are painful to the touch! So he CLINICALLY DX's me with

> Fibromyalgia!

> (you are clinically DX if you have 11 out of the 18) Thats good

news right?

> I finally have 1 answer to most of my pain.

>

> Until he tells me that once I have this, it's for LIFE!

> He said that it can lay dormant in our bodies for a long time, (does

this

> mean it could be hereditary?....he said no/well, maybe.) He goes on

to tell

> me that a sudden tramatic experience or long, long periods of stress

can

> trigger it. But there is no going back to the way I

> was.....................I want to cry.....

>

> I did get all that info. he told me, confirmed by some research I

did on

> Fibro. I asked him about it possibly being a neurological problem?

He said

> no. I am just beside myself, I don't know what to do......I am

trying so

> hard to keep my spirits up and stay positive.

>

> But I really am just so sad, and I have been crying so much!!!! On

top of it

> all, I am having a flare-up with something that is making my face

swell with

> turning red and blotchy, along with severe itching. But the itching

is all

> over my body too. I had a similar incident in July of 2000.

>

> PCP at that time(the one who called me a hypocondricat!) said I was

just

> having an allergic reaction to something. Sent me to a Dermatologist.

> He gave me a steriod shot and some creams. It went away, but I

never found

> out what happened! Now it's happening again. Calling PCP on

Monday. I

> thought it might be cia.....but I really think it's related to my

> thyroid, bec. I remember, when it happened the last time; my thyroid

was way

> off and had to be increased. And it never happened again, until now.

>

> So I am a mess!! In constant pain and awful, awful fatigue. Now

the face

> thing, with the body itching.

> (didn't have the body itching though, in 2000.)

> I just want to feel somewhat human......

> I want to be able to stay up after being awake for only 2/3 hours.

I want to

> walk up the stairs without my legs hurting. I want to play chase

with my

> children outside. I want a clean house for my family on a REGULAR

basis!!

> instead of once in a while.......

> keeping up on laundry would be nice!!

> Sitting at this computer, is becoming unbearable too!!

>

> BUT most of all????......I don't want this pain........I am so tired

of it.

> I am back to crawling out of bed in the mornings. After a while I

do loosen

> up. Seems like, I am stiff as a board, and if I dare move, I cause

awful

> pain everywhere!! With the Amitrip., I have noticed a decrease in

pain, but

> this is just getting to be too much. I am 34......I want to curl up

and cry

> or die!!

>

> Anger is becoming worse too. I am starting to have bad fits when I

happen to

> move the wrong way, (like just bending over)!! and I cause the pain

thats

> already there to be worse!! It's a hit and miss sometimes. I can

bend over

> fine one day, and not the other. Stretch out my legs one day, but not

> another! I am just so fed up!

>

> So if this is never going away, I will have to stay on

anti-depressants for

> LIFE!! Isn't that gonna hurt my liver???????? and therefore

creating more

> issues???

>

> I am thinking about experimenting. Going off the Amitrip. I want

to see if

> all the pain comes back.

> To the crippling point I mean! I have to be sure of these DX's. I am

> getting to where I don't trust my PCP now!!!! And I spoke so highly

of him

> before.......

>

> I don't trust anyone, right now!! I feel like a darn lab rat, just

waiting

> to die, from too many experiments and tests that aren't proving

ANYTHING!!!

> I am just LOST!!!!!!!! Why me?? I have been asking myself???

> What did I do to deserve this??? I have kids that are too small to

> understand, and teenagers that are failing their classes!! Just a

trip to

> the E.R. with my 7 yr. old

> was unbearable!! Keeping up the household/bills/kids/cars/constant

teacher

> conferences!!!!! and more and more...too much to tell!!

>

> Rob is gone more and more all the time, I even accused him of having an

> affair!! I don't really believe he is, (i think).

> He doesn't go with me to doctors appts. anymore.

> Just asking him to watch , so I can go to the doc's. I always

get the big

> sigh.......then he'll say...

> (ok, I'll try!!) He always, (without fail) acts like I am intruding

in his

> BUSY work life and I should understand that he is just too busy!!

>

> Well, I do to a point! I have no one here with me and feel so

alone!! You

> people on this group are all I have. I do have 2 friends that live

3 and 4

> hours away. My long distance bill was sky rocketing, so I can't

talk with

> them much at all. Only one friend has a computer, and we do e-mail

each

> other. But she has 2 small kids at at home and runs a

daycare.....so not

> much time for friends.....

> So here I am......with you all......I am so lucky and happy to have

you all

> in my life!!!!

> Thanks for letting me cry.......

> HUGS....

> Bert. /the lonely lab rat!!

[Guest guest]

Dear Bert--I've never posted directly to anyone on the board before

except once to Harper. But, I want to say that I can almost hear

myself 4 years ago in your message except that I am older and do not

have young children. The frustration and the anger were all mine back

then--some days I just felt like banging my head against the wall

repeatedly(I know how stupid that sounds--but I really felt like it

then) I don't know what course your version of these sujective

diseases will take and do not know how long you have had them or

whether you mean teacher conferences as a parent or as a teacher.

But, I do know that taking time off from my job helped, I do know

that I asked my Dr. for the name of a counselor and talking to her

helped a great deal. Our local hospital offered a general support

group for people with chronic disease/pain or for those caregivers

that lived with them--I chose the individual counseling, but have

been told by many that the hospital group was wonderfully effective

and that they found friends who understood there. Perhaps none of

these are practical for you, but if they are, I recommend them. Good

luck and God bless. Jean

>

> Hi There Everyone! Hope you all are doing good!!

> I have to vent right now.....(my turn)

> Sorry can't hold it in any longer!!

>

> I am just so tired of these ups and owns I could just scream!! I

did go to

> the doctors last Wed. (PCP)

> Liver enzymes are back up to 83, from 62. AST's

> (i think he said) is up to 65 from 42? Slowly creeping up! I get

these darn

> things mixed up.....LFT's, ALT's, AST's, LDL's, LDC's......this

crap, is

> really starting to annoy me so much I feel like just throwing in

the towel!!

> I know that the LDL/LDC is for Cholestrol.

> but still get them confused!! I do have high Cholestrol, but doc.

won't give

> me anything, bec. of my liver. Still can't take anything for pain

either.

>

> I am off the Acephix. It wasn't needed after-all. Four bottles

of that

> running through my liver for nothing!! Off the pred. for good

right now.

> Still on the IBS med. and Amitrip.(anti-depressant) and of course

my

> snythroid. PCP says, he is concerned with the fatty liver issue,

bec. I do

> not drink, and i am not over-weight. But he is not concerned about

the cysts

> on my kidney or liver. So he says I will be monitored for 3

months.

> Blood-work done once a month to see what the liver does! Ok, then

I said,

> how can you be sure about the cysts? He says well, sometimes the

kidneys

> just develop cysts....(i can't explain it the way he did)

>

> I said, OK, how can you be sure the cyst on my liver is benign? He

said he

> trusts the scan. I said, well, I am not comfortable with that!!

His reply??

> " I am not going to be satisfied until I have the biopsy " I of

course got

> defensive and said, you know doc? I can't afford for things to go

> OVER-looked anymore!! I have been sick way too long and I have had

too many

> incompetent doctors!! I will not be strung along anymore! I have

the pain

> back, and the fatigue is awful!! I have a LIFE and want to LIVE

it!!!!!!!!!!

>

> He agreed and apologized, if he had made me feel like nothing is

getting done

> or DX's. He said, lets see what the gastro says. Then in his next

breath,

> he says, but, I can almost guarantee that he won't do the

biopsy.....I was

> crushed! I want some definite answers. I know biopsies aren't

always

> reliable, but heck, it sure is better than all this off-on....

> off-on....meds. and just blood-work, along with the

> GUESS-work!! It really is driving me NUTS!!

>

> I was supposed to see the gastro the next day(thurs.)

> but, Rob couldn't get home to take care of . I normally take

with

> me everywhere, but he is sick and very cranky, so I thought trying

to take

> him, would have been disastrous!! So I canceled it. Did I make

another

> appt..?? No!!!! Am I going to?? Don't know.

> The way I feel right now, I don't care anymore!!

>

> Maybe will request or DEMAND! another GI doc.

> Also.....all these co-pays and money for prescriptions, is really

putting a

> burden on us. I only want necessary appts. and scripts. Not doing

this dumb

> experimenting s**t anymore!! So at this point, I am lost. BTW,

with

> Fibromyalgia, it's a clinical DX's for one thing. Not a PROVEN

illness.

>

> They have no clue was causes it or how to control it. Only that

some

> research has showed, that

> anti-depressants help. Researchers also say, that there are 18

areas on the

> body that usually are affected by Fibromyalgia. 2 points behind

the neck,

> 2 points on the shoulder blade area(both sides),

> just above the elbows(or below). 2 points in the hip area on both

sides; and

> the knees and ankles.

>

> A lot are in the joint areas. Ok, so he does the test on me. The

test?? is

> only, that he pushes on these areas in a circular motion, with some

pressure.

> Every area on my left side is EXTREMELY painful! almost crippling

me to the

> touch(especially the hip and shoulder)

> I have a few on the right, but not near as bad. So I have 12 out

of the 18

> areas that are painful to the touch! So he CLINICALLY DX's me with

> Fibromyalgia!

> (you are clinically DX if you have 11 out of the 18) Thats good

news right?

> I finally have 1 answer to most of my pain.

>

> Until he tells me that once I have this, it's for LIFE!

> He said that it can lay dormant in our bodies for a long time,

(does this

> mean it could be hereditary?....he said no/well, maybe.) He goes

on to tell

> me that a sudden tramatic experience or long, long periods of

stress can

> trigger it. But there is no going back to the way I

> was.....................I want to cry.....

>

> I did get all that info. he told me, confirmed by some research I

did on

> Fibro. I asked him about it possibly being a neurological

problem? He said

> no. I am just beside myself, I don't know what to do......I am

trying so

> hard to keep my spirits up and stay positive.

>

> But I really am just so sad, and I have been crying so much!!!! On

top of it

> all, I am having a flare-up with something that is making my face

swell with

> turning red and blotchy, along with severe itching. But the

itching is all

> over my body too. I had a similar incident in July of 2000.

>

> PCP at that time(the one who called me a hypocondricat!) said I was

just

> having an allergic reaction to something. Sent me to a

Dermatologist.

> He gave me a steriod shot and some creams. It went away, but I

never found

> out what happened! Now it's happening again. Calling PCP on

Monday. I

> thought it might be cia.....but I really think it's related to

my

> thyroid, bec. I remember, when it happened the last time; my

thyroid was way

> off and had to be increased. And it never happened again, until

now.

>

> So I am a mess!! In constant pain and awful, awful fatigue. Now

the face

> thing, with the body itching.

> (didn't have the body itching though, in 2000.)

> I just want to feel somewhat human......

> I want to be able to stay up after being awake for only 2/3 hours.

I want to

> walk up the stairs without my legs hurting. I want to play chase

with my

> children outside. I want a clean house for my family on a REGULAR

basis!!

> instead of once in a while.......

> keeping up on laundry would be nice!!

> Sitting at this computer, is becoming unbearable too!!

>

> BUT most of all????......I don't want this pain........I am so

tired of it.

> I am back to crawling out of bed in the mornings. After a while I

do loosen

> up. Seems like, I am stiff as a board, and if I dare move, I cause

awful

> pain everywhere!! With the Amitrip., I have noticed a decrease in

pain, but

> this is just getting to be too much. I am 34......I want to curl

up and cry

> or die!!

>

> Anger is becoming worse too. I am starting to have bad fits when I

happen to

> move the wrong way, (like just bending over)!! and I cause the pain

thats

> already there to be worse!! It's a hit and miss sometimes. I can

bend over

> fine one day, and not the other. Stretch out my legs one day, but

not

> another! I am just so fed up!

>

> So if this is never going away, I will have to stay on anti-

depressants for

> LIFE!! Isn't that gonna hurt my liver???????? and therefore

creating more

> issues???

>

> I am thinking about experimenting. Going off the Amitrip. I want

to see if

> all the pain comes back.

> To the crippling point I mean! I have to be sure of these DX's. I

am

> getting to where I don't trust my PCP now!!!! And I spoke so

highly of him

> before.......

>

> I don't trust anyone, right now!! I feel like a darn lab rat, just

waiting

> to die, from too many experiments and tests that aren't proving

ANYTHING!!!

> I am just LOST!!!!!!!! Why me?? I have been asking myself???

> What did I do to deserve this??? I have kids that are too small to

> understand, and teenagers that are failing their classes!! Just a

trip to

> the E.R. with my 7 yr. old

> was unbearable!! Keeping up the household/bills/kids/cars/constant

teacher

> conferences!!!!! and more and more...too much to tell!!

>

> Rob is gone more and more all the time, I even accused him of

having an

> affair!! I don't really believe he is, (i think).

> He doesn't go with me to doctors appts. anymore.

> Just asking him to watch , so I can go to the doc's. I always

get the big

> sigh.......then he'll say...

> (ok, I'll try!!) He always, (without fail) acts like I am

intruding in his

> BUSY work life and I should understand that he is just too busy!!

>

> Well, I do to a point! I have no one here with me and feel so

alone!! You

> people on this group are all I have. I do have 2 friends that live

3 and 4

> hours away. My long distance bill was sky rocketing, so I can't

talk with

> them much at all. Only one friend has a computer, and we do e-mail

each

> other. But she has 2 small kids at at home and runs a

daycare.....so not

> much time for friends.....

> So here I am......with you all......I am so lucky and happy to have

you all

> in my life!!!!

> Thanks for letting me cry.......

> HUGS....

> Bert. /the lonely lab rat!!

[Guest guest]

, some excellent advice!

debby

[ ] Re: I need to vent!! very long!!

Bert,Feel free to vent any time. If you can't vent here,where are you going to vent? Please do not experiment with your medication by goingoff of it. That is very dangerous. Hang in there.Jeanette is right that you could end up in a worsecondition and in even more pain. DON'T DO IT! (Thatwas an intentional shout, by the way)Call tomorrow and make a new appointment with yourgastro. Then make arrangements for a babysitter at thesame time; try the next door neighbor or someone atyour church. There is someone out there who will watch (safely) for you while you are at the doctor. I am not married so you may want to ignore thefollowing. Send the kids to the movies or to theirfriends' house and then sit down and talk seriouslywith your husband about how you feel - the fear thatyou have, the frustrations that you are feeling, thepain that you have been hiding from him, and thefeelings of distrust you have in your doctor, and yourfeelings of dealing with all of this alone. From allthat you have written about your husband, he soundslike a guy who is very busy, but also a guy that lovesyou a great deal. Ask him to help you find the answersto your medical concerns. I am sure that he has noidea the amount of pain and frustration that you havebeen dealing with alone.I understand perfectly the amount of strain thatmedications, doctors' visits, etc. has on the budget.That is also adding to your stress. You want answers to so many issues that they havebecome overbearing. Put some goals on paper and thenprioritize them. What answers do you want the most?Then, set up a plan (with or without your husband) tofind those answers. Disregard any of this rambling that you wish, but knowthat I am concerned about you (all of us here areconcerned about you) and want you to find some peace.Prayers come your way today and always.__________________________________________________

[Guest guest]

This is extremely good advice. Please take the time to talk to your husband, he may think he knows what you are going through, but unless they have been there they don't know.

I know this may sound like do as i say and not as i do but do not go off meds. I feel like going off my also, as i see where they are not doing anything, except making me go crazy and pushing friends away.

Glo

[ ] Re: I need to vent!! very long!!

Bert,Feel free to vent any time. If you can't vent here,where are you going to vent? Please do not experiment with your medication by goingoff of it. That is very dangerous. Hang in there.Jeanette is right that you could end up in a worsecondition and in even more pain. DON'T DO IT! (Thatwas an intentional shout, by the way)Call tomorrow and make a new appointment with yourgastro. Then make arrangements for a babysitter at thesame time; try the next door neighbor or someone atyour church. There is someone out there who will watch (safely) for you while you are at the doctor. I am not married so you may want to ignore thefollowing. Send the kids to the movies or to theirfriends' house and then sit down and talk seriouslywith your husband about how you feel - the fear thatyou have, the frustrations that you are feeling, thepain that you have been hiding from him, and thefeelings of distrust you have in your doctor, and yourfeelings of dealing with all of this alone. From allthat you have written about your husband, he soundslike a guy who is very busy, but also a guy that lovesyou a great deal. Ask him to help you find the answersto your medical concerns. I am sure that he has noidea the amount of pain and frustration that you havebeen dealing with alone.I understand perfectly the amount of strain thatmedications, doctors' visits, etc. has on the budget.That is also adding to your stress. You want answers to so many issues that they havebecome overbearing. Put some goals on paper and thenprioritize them. What answers do you want the most?Then, set up a plan (with or without your husband) tofind those answers. Disregard any of this rambling that you wish, but knowthat I am concerned about you (all of us here areconcerned about you) and want you to find some peace.Prayers come your way today and always.__________________________________________________