New Member

Report post · June 12, 2005

> We've started some diet changes for our 3 boys: 4 1/2, 3 1/2, and 10

> months and will be seeking mercury detox eventually. All information

> will be greatly appreciated.

Here is my general info page, with links to other sources

http://www.danasview.net/chelate.htm

> Are their any legal proceedings in the process concerning Immunizations

> and Thimerosol.

Yes. Scroll down this section, at the end I include law firms taking

cases

http://www.danasview.net/parent3.htm#vaccines

Dana

Report post · June 12, 2005

I use to spend all my summers in Battle Creek!! I took my daughter there for

the first time last year and may take the entire family this year.

First I would get the book Children with Starving Brains. Get the 2005

edition only. This book will explain the detox process etc. Also join the

EOH group. If you don't have the book Evidence of Harm by Kirby

please

get it. Glad you found Generation Rescue!!!!!!!

Yes there are legal proceedings going on - Waters and Kraus is the law firm.

's book tells you more.

Welcome!!

Kathy Hybl in VA

Report post · June 16, 2005

Hi Vera,

I took Remicade and four days later experienced pancreatitis. Also had near

death experience due to servere infections. It was discovered after remicade I

had a

non-cancerous stricture of the common bile duct. I don't believe the remicade

was responsible for the stricture. However, I can tell you that it was probably

the cause

of the pancreatitis and most definitely the horrible infections. It was the

infections that they told me were going to kill me. I did have surgery twice

and that has

helped. Although to this day I can not fight a simple cold. If I get a cold,

virus, anything it will last for a long time and it will be hard to get over it.

I had

the flu a year and a half ago, it lasted over four weeks. I did call the people

who makes remicade and they have advise me to never take it again. Of course it

has

never been a thought to that it again. Hope this helps, if need any more

information just let me know.

Lynn

and Vera Penick wrote:

> My name is Vera and I have joined your wonderful group.

>

> My husband has had RA since he was 27 and is now 71. His medications

> stopped working so his Rheumatoligist suggested Remicade. After the first

> infusion of Remicade he began having pain in his lower back then both legs

> and the front of one thigh have become numb. He's been x-rayed and back

> problems are ruled out. So the thinking is his problem is a side effect of

> the Remicade. Any problems such as he's having are listed as possible side

> effects in the litature.

>

> Have any of you experienced such side effects after you were given

> Remicade?? Did it clear up over time??

>

> Thank you,

> Vera/Central Florida

>

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.323 / Virus Database: 267.7.5/18 - Release Date: 6/15/2005

>

Report post · June 17, 2005

Welcome, Vera!

Sorry to hear that your husband is having such troubles. I don't recall

anyone having symptoms like this with Remicade, but there have been a few

similar reports with Enbrel in the group.

How many infusions of Remicade has he had? How long after the first infusion

did he notice the symptoms?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] new member

> My name is Vera and I have joined your wonderful group.

>

> My husband has had RA since he was 27 and is now 71. His medications

> stopped working so his Rheumatoligist suggested Remicade. After the first

> infusion of Remicade he began having pain in his lower back then both legs

> and the front of one thigh have become numb. He's been x-rayed and back

> problems are ruled out. So the thinking is his problem is a side effect

> of

> the Remicade. Any problems such as he's having are listed as possible

> side

> effects in the litature.

>

> Have any of you experienced such side effects after you were given

> Remicade?? Did it clear up over time??

>

> Thank you,

> Vera/Central Florida

Report post · June 17, 2005

Welcome to the group, Vera and ! You will find wonderful

information, and meet lots of great people.

I have never taken Remicade, but sure you will get some answers from

other members.

Hugs, Tawny

> My name is Vera and I have joined your wonderful group.

>

> My husband has had RA since he was 27 and is now 71. His

medications

> stopped working so his Rheumatoligist suggested Remicade. After

the first

> infusion of Remicade he began having pain in his lower back then

both legs

> and the front of one thigh have become numb. He's been x-rayed and

back

> problems are ruled out. So the thinking is his problem is a side

effect of

> the Remicade. Any problems such as he's having are listed as

possible side

> effects in the litature.

>

> Have any of you experienced such side effects after you were given

> Remicade?? Did it clear up over time??

>

> Thank you,

> Vera/Central Florida

>

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.323 / Virus Database: 267.7.5/18 - Release Date:

6/15/2005

Report post · June 21, 2005

In a message dated 6/20/05 1:01:14 AM GMT Daylight Time,

viking_warlock@... writes:

Hi all. I am new to this and been diagnosed with pa for last five

years. I am taking diclofenac, mtx and sulphasalazine. I dont sleep

well and find the fatigue very frustrating. my ps has flaired knees,

elbows, scalp, ears and lower back. I hate taking medication. pa

affecting areas, the list is too long.

Hi viking,

Welcome to the group. You will find plenty of people here who will be able

to identify with what you are going through and will hopefully be able to help

you in some way, either through info, answering any questions you may have or

just being there to listen. I hope you find what you are looking for.

Report post · June 24, 2005

Hello Shirley and welcome,

You have come to a place where many people can show you a spirit of courage you

won't believe. My hat is off to them and my heart goes out to them. I am one

of the lucky ones. Got RA at 58 and so far have a mild case.

Are there doctors who specialize in pain management in your area? Perhaps if

so, one of them might be able to make you somewhat more comfortable.

Kathy in Ct

[ ] NEW MEMBER

HELLO EVERYBODY AND KK,

I JUST WANTED TO SAY HELLO. I DONT HAVE RA(I DONT THINK) BUT KIM

SAID I SHOULD JOIN YOUR GROUP. SO HERE GOES..

I AM 49, MARRIED, AND AT 47 YRS HAD MY WHOLE LIFE AHEAD OF ME.. I

MEAN I HAD IT ALL. MY HUSBAND AND I HAD OUR OWN SEMI TRUCK, MAKING A

VERY COMFORTABLE LIVING, 175K PLUS, WERE TOGHETHER 24/7, GETTING

PAID TO BE ON VACATION YEAR ROUND, THE WHITE HOUSE, MISSING THE

PICKET FENCE, TWO DOGS TO REPLACE THE CHILDREN I COULD NOT

HAVE...ECT...ECT...

ON MAY 5, 2003 LIFE AS WE KNEW IT HIT THE FAN. WE WERE DELIVERING A

LOAD OF HOUSEHOLD GOOD (MOVING IN A GREAT MILITARY FAMILY) WHEN I

BENT OVER TO UNWRAP A PIECE OF FURNITURE, WHEN SOMETHING IN MY BACK

SNAPPED, INSTANT AND SEVER PAIN.

TO MAKE THIS VERY LONG STORY SHORT, I HAD HERNIATED L4-L5 (DOUBLE

HERNIATION, WHICH MEANS I BLEW OUT BOTH SIDES OF THE SAME DISC). I

WAS SEEN @ OUR GREAT ER HERE(HA!HA!) AND THE DR TOLD ME NOTHING WAS

BROKEN AND TO RETURN TO WORK THE FOLLOWING DAY.

I WENT TO SEE MY FAMILY DR, WHO ACTED AS IF I JUST WANTED SOME TIME-

OFF ON WC. THIS WAS ON A TUESDAY. HE SET UP PT AND HAD ME RETURN

ON FRIDAY, AS HE WAS GOING ON VACATION!! PT WAS CAUSING EVEN MORE

PAIN, AND I JUST HURT ALL THE TIME. ON FRIDAY HE SET UP AN MRI AND

SAID TO COME BACK A WEEK FROM MONDAY, BUT CONTINUE PT!!!

MRI THE FOLLOWING TUESDAY REVEALED THE HERINATED DISC. WAS CALLED

FROM DR'S OFC TO TELL ME TO DO NOTHING, NOT EVEN SNEEZE IF AVOIDABLE

AS I COULD PARALIZE MYSELF AND THEY WERE SETTING UP APPT WITH NEUR

SURGEON. I WAITED TIL SAW MY DR THE FOLLOWING MONDAY, AT WICH TIME

HIS ATTITUDE TOWARDS ME HAD CHANGED. COMPLETE 360...

SAW NEUR SURGEON ON WED, OF THE SAME WEEK, HAD SURGERY ON THURS.

FOR ABOUT 3-4 MOS I WAS DOING GREAT. LIFE WAS GOOD!! THEN MY WORLD

CRASHED AGAIN. I STARTED HAVING SEVERE PAIN SHOOTING DOWN MY LEGS

AND SEVERE PAIN IN MY TAILBONE, ESPECIALLY WHEN HAVING BM. WENT

BACK TO NEUR DR AND HAD SECOND MRI,WICH REVEALED DISC DESICCATION AT

L3-4, L4-5, AND L5-S1, AND LUMBAR SPINAL STENOSIS. AT THIS TIME HE

SET UP FCA AND SPINAL EPIDURAL STERIOD INJECTION, WHICH WERE DONE

TWICE WITH LITTLE COMFORT.

AFTER THE FCA I SAW THE NEUR SERGEON AND WAS TOLD THAT THERE WAS

NOTHING THAT COULD BE DONE, AT WHICH TIME I ASKED FOR A SECOND

OPINION, ALSO TURNED OUT TO BE A JOKE, BUT I WENT TO WICHITA,KS TO

SEE ANOTHER NEUR DR WHO BASICALLY TOLD ME HE COULD OPERATE AGAING,

BUT WAS 50/50 BE PARALIZED AND ONLY 25% DO ANYTHING FOR MY PAIN, AND

OH YEAH, 2YR RECOVERY TIME AND MUST QUIT SMOKING FIRST. NOT VERY

GOOD ODDS.

IN FEB 04 I WAS RELEASED BY NUER SERGEON, TOLD I WAS TOTALLY

DISABLED, AND GO HOME AND LEARN TO LIVE WITH THIS PAIN. I AM

CURRENTLY TAKING SOMA 350MG(3X DAILY), 1 OR 2 LORTAB 10/500MG. I

TRIED NEURONTIN, BUT SIDE EFFECTS WERE TERRIBLE.

I AM IN SEVERE PAIN ALL THE TIME, I CANNOT SIT OR STAND FOR ANY

LENGTH OF TIME WITHOUT VERY SEVERE PAIN. HOW DOES A PERSON COPE

WITH THIS? ANY AND ALL COMENTS WILL BE GREATLY APRECIATED!!!

OH, AT THIS TIME I HAVE APPLIED FOR SSD, HUSBAND MAKES TOO MUCH

MONEY FOR SSID, EVEN THOUGH WE HAVE LOST OUR TRUCK AND HAD TO FILE

BANKRUPTCY!!!

I AM VERY DEPRESSE MOST DAYS. PLEASE HELP ME!!!!!!!!!

Report post · June 24, 2005

Hi Shirley.

Welcome to the group! It's a great bunch of VERY imformative and

caring people here....so I'm sure you'll find the support you need.

I can't even begin to understand the pain you're experiencing with you

back. The only advice I can give you is to make sure you have good

pain management/control. Reaching out to this group is a good start to

making sure you're connecting with other people who live in chronic

pain or understand what it's like to be dealing with pain on a daily

basis. Don't isolate yourself, because it can lead to depression.

Just one other thing I was going to mention: Shortly after losing my job

because of RA, I went to see an employment counsellor. (Silly me,

thought I could actually re-train for a job before I even had my

disease/pain under control!) I was asked if I had mourned the loss of

my old life yet. I started to cry right there in the office in front of the

counsellor. Obviously, the answer was " no " . Take the time to mourn

for the loss of your old lifestyle. Things do get better, I promise. You

learn ways of coping with the pain and managing your life so that you

can still do some of the things you used to.

Hang in there...

> HELLO EVERYBODY AND KK,

>

> I JUST WANTED TO SAY HELLO. I DONT HAVE RA(I DONT

THINK) BUT KIM

> SAID I SHOULD JOIN YOUR GROUP. SO HERE GOES..

>

> I AM 49, MARRIED, AND AT 47 YRS HAD MY WHOLE LIFE AHEAD

OF ME.. I

> MEAN I HAD IT ALL. MY HUSBAND AND I HAD OUR OWN SEMI

TRUCK, MAKING A

> VERY COMFORTABLE LIVING, 175K PLUS, WERE TOGHETHER

24/7, GETTING

> PAID TO BE ON VACATION YEAR ROUND, THE WHITE HOUSE,

MISSING THE

> PICKET FENCE, TWO DOGS TO REPLACE THE CHILDREN I

COULD NOT

> HAVE...ECT...ECT...

>

> ON MAY 5, 2003 LIFE AS WE KNEW IT HIT THE FAN. WE WERE

DELIVERING A

> LOAD OF HOUSEHOLD GOOD (MOVING IN A GREAT MILITARY

FAMILY) WHEN I

> BENT OVER TO UNWRAP A PIECE OF FURNITURE, WHEN

SOMETHING IN MY BACK

> SNAPPED, INSTANT AND SEVER PAIN.

>

> TO MAKE THIS VERY LONG STORY SHORT, I HAD HERNIATED

L4-L5 (DOUBLE

> HERNIATION, WHICH MEANS I BLEW OUT BOTH SIDES OF THE

SAME DISC). I

> WAS SEEN @ OUR GREAT ER HERE(HA!HA!) AND THE DR TOLD

ME NOTHING WAS

> BROKEN AND TO RETURN TO WORK THE FOLLOWING DAY.

>

> I WENT TO SEE MY FAMILY DR, WHO ACTED AS IF I JUST

WANTED SOME TIME-

> OFF ON WC. THIS WAS ON A TUESDAY. HE SET UP PT AND

HAD ME RETURN

> ON FRIDAY, AS HE WAS GOING ON VACATION!! PT WAS

CAUSING EVEN MORE

> PAIN, AND I JUST HURT ALL THE TIME. ON FRIDAY HE SET UP

AN MRI AND

> SAID TO COME BACK A WEEK FROM MONDAY, BUT CONTINUE

PT!!!

>

> MRI THE FOLLOWING TUESDAY REVEALED THE HERINATED

DISC. WAS CALLED

> FROM DR'S OFC TO TELL ME TO DO NOTHING, NOT EVEN

SNEEZE IF AVOIDABLE

> AS I COULD PARALIZE MYSELF AND THEY WERE SETTING UP

APPT WITH NEUR

> SURGEON. I WAITED TIL SAW MY DR THE FOLLOWING

MONDAY, AT WICH TIME

> HIS ATTITUDE TOWARDS ME HAD CHANGED. COMPLETE 360...

>

> SAW NEUR SURGEON ON WED, OF THE SAME WEEK, HAD

SURGERY ON THURS.

> FOR ABOUT 3-4 MOS I WAS DOING GREAT. LIFE WAS GOOD!!

THEN MY WORLD

> CRASHED AGAIN. I STARTED HAVING SEVERE PAIN SHOOTING

DOWN MY LEGS

> AND SEVERE PAIN IN MY TAILBONE, ESPECIALLY WHEN

HAVING BM. WENT

> BACK TO NEUR DR AND HAD SECOND MRI,WICH REVEALED

DISC DESICCATION AT

> L3-4, L4-5, AND L5-S1, AND LUMBAR SPINAL STENOSIS. AT

THIS TIME HE

> SET UP FCA AND SPINAL EPIDURAL STERIOD INJECTION,

WHICH WERE DONE

> TWICE WITH LITTLE COMFORT.

>

> AFTER THE FCA I SAW THE NEUR SERGEON AND WAS TOLD

THAT THERE WAS

> NOTHING THAT COULD BE DONE, AT WHICH TIME I ASKED FOR

A SECOND

> OPINION, ALSO TURNED OUT TO BE A JOKE, BUT I WENT TO

WICHITA,KS TO

> SEE ANOTHER NEUR DR WHO BASICALLY TOLD ME HE COULD

OPERATE AGAING,

> BUT WAS 50/50 BE PARALIZED AND ONLY 25% DO ANYTHING

FOR MY PAIN, AND

> OH YEAH, 2YR RECOVERY TIME AND MUST QUIT SMOKING

FIRST. NOT VERY

> GOOD ODDS.

>

> IN FEB 04 I WAS RELEASED BY NUER SERGEON, TOLD I WAS

TOTALLY

> DISABLED, AND GO HOME AND LEARN TO LIVE WITH THIS

PAIN. I AM

> CURRENTLY TAKING SOMA 350MG(3X DAILY), 1 OR 2 LORTAB

10/500MG. I

> TRIED NEURONTIN, BUT SIDE EFFECTS WERE TERRIBLE.

>

> I AM IN SEVERE PAIN ALL THE TIME, I CANNOT SIT OR STAND

FOR ANY

> LENGTH OF TIME WITHOUT VERY SEVERE PAIN. HOW DOES A

PERSON COPE

> WITH THIS? ANY AND ALL COMENTS WILL BE GREATLY

APRECIATED!!!

> OH, AT THIS TIME I HAVE APPLIED FOR SSD, HUSBAND MAKES

TOO MUCH

> MONEY FOR SSID, EVEN THOUGH WE HAVE LOST OUR TRUCK

AND HAD TO FILE

> BANKRUPTCY!!!

>

> I AM VERY DEPRESSE MOST DAYS. PLEASE HELP ME!!!!!!!!!

Report post · June 25, 2005

Welcome Shirley,

I am so sorry that your in so much pain. We all go through pain and

frustration, and it's so hard to deal with. There's no easy way, just

take each day, and do the best you can. It does help to have a good

doctor, that understands your pain, and tries to work with you to

make your life a little easier.

I'm glad your here, this is a wonderful group, Tawny

> HELLO EVERYBODY AND KK,

>

> I JUST WANTED TO SAY HELLO. I DONT HAVE RA(I DONT THINK) BUT KIM

> SAID I SHOULD JOIN YOUR GROUP. SO HERE GOES..

>

> I AM 49, MARRIED, AND AT 47 YRS HAD MY WHOLE LIFE AHEAD OF ME.. I

> MEAN I HAD IT ALL. MY HUSBAND AND I HAD OUR OWN SEMI TRUCK, MAKING

A

> VERY COMFORTABLE LIVING, 175K PLUS, WERE TOGHETHER 24/7, GETTING

> PAID TO BE ON VACATION YEAR ROUND, THE WHITE HOUSE, MISSING THE

> PICKET FENCE, TWO DOGS TO REPLACE THE CHILDREN I COULD NOT

> HAVE...ECT...ECT...

>

> ON MAY 5, 2003 LIFE AS WE KNEW IT HIT THE FAN. WE WERE DELIVERING

A

> LOAD OF HOUSEHOLD GOOD (MOVING IN A GREAT MILITARY FAMILY) WHEN I

> BENT OVER TO UNWRAP A PIECE OF FURNITURE, WHEN SOMETHING IN MY BACK

> SNAPPED, INSTANT AND SEVER PAIN.

>

> TO MAKE THIS VERY LONG STORY SHORT, I HAD HERNIATED L4-L5 (DOUBLE

> HERNIATION, WHICH MEANS I BLEW OUT BOTH SIDES OF THE SAME DISC). I

> WAS SEEN @ OUR GREAT ER HERE(HA!HA!) AND THE DR TOLD ME NOTHING WAS

> BROKEN AND TO RETURN TO WORK THE FOLLOWING DAY.

>

> I WENT TO SEE MY FAMILY DR, WHO ACTED AS IF I JUST WANTED SOME TIME-

> OFF ON WC. THIS WAS ON A TUESDAY. HE SET UP PT AND HAD ME RETURN

> ON FRIDAY, AS HE WAS GOING ON VACATION!! PT WAS CAUSING EVEN MORE

> PAIN, AND I JUST HURT ALL THE TIME. ON FRIDAY HE SET UP AN MRI AND

> SAID TO COME BACK A WEEK FROM MONDAY, BUT CONTINUE PT!!!

>

> MRI THE FOLLOWING TUESDAY REVEALED THE HERINATED DISC. WAS CALLED

> FROM DR'S OFC TO TELL ME TO DO NOTHING, NOT EVEN SNEEZE IF

AVOIDABLE

> AS I COULD PARALIZE MYSELF AND THEY WERE SETTING UP APPT WITH NEUR

> SURGEON. I WAITED TIL SAW MY DR THE FOLLOWING MONDAY, AT WICH TIME

> HIS ATTITUDE TOWARDS ME HAD CHANGED. COMPLETE 360...

>

> SAW NEUR SURGEON ON WED, OF THE SAME WEEK, HAD SURGERY ON THURS.

> FOR ABOUT 3-4 MOS I WAS DOING GREAT. LIFE WAS GOOD!! THEN MY WORLD

> CRASHED AGAIN. I STARTED HAVING SEVERE PAIN SHOOTING DOWN MY LEGS

> AND SEVERE PAIN IN MY TAILBONE, ESPECIALLY WHEN HAVING BM. WENT

> BACK TO NEUR DR AND HAD SECOND MRI,WICH REVEALED DISC DESICCATION

AT

> L3-4, L4-5, AND L5-S1, AND LUMBAR SPINAL STENOSIS. AT THIS TIME HE

> SET UP FCA AND SPINAL EPIDURAL STERIOD INJECTION, WHICH WERE DONE

> TWICE WITH LITTLE COMFORT.

>

> AFTER THE FCA I SAW THE NEUR SERGEON AND WAS TOLD THAT THERE WAS

> NOTHING THAT COULD BE DONE, AT WHICH TIME I ASKED FOR A SECOND

> OPINION, ALSO TURNED OUT TO BE A JOKE, BUT I WENT TO WICHITA,KS TO

> SEE ANOTHER NEUR DR WHO BASICALLY TOLD ME HE COULD OPERATE AGAING,

> BUT WAS 50/50 BE PARALIZED AND ONLY 25% DO ANYTHING FOR MY PAIN,

AND

> OH YEAH, 2YR RECOVERY TIME AND MUST QUIT SMOKING FIRST. NOT VERY

> GOOD ODDS.

>

> IN FEB 04 I WAS RELEASED BY NUER SERGEON, TOLD I WAS TOTALLY

> DISABLED, AND GO HOME AND LEARN TO LIVE WITH THIS PAIN. I AM

> CURRENTLY TAKING SOMA 350MG(3X DAILY), 1 OR 2 LORTAB 10/500MG. I

> TRIED NEURONTIN, BUT SIDE EFFECTS WERE TERRIBLE.

>

> I AM IN SEVERE PAIN ALL THE TIME, I CANNOT SIT OR STAND FOR ANY

> LENGTH OF TIME WITHOUT VERY SEVERE PAIN. HOW DOES A PERSON COPE

> WITH THIS? ANY AND ALL COMENTS WILL BE GREATLY APRECIATED!!!

> OH, AT THIS TIME I HAVE APPLIED FOR SSD, HUSBAND MAKES TOO MUCH

> MONEY FOR SSID, EVEN THOUGH WE HAVE LOST OUR TRUCK AND HAD TO FILE

> BANKRUPTCY!!!

>

> I AM VERY DEPRESSE MOST DAYS. PLEASE HELP ME!!!!!!!!!

Report post · June 25, 2005

Hello,

I have so much empathy for you and to try and help you I would say

this. I have severe RA and degenerative disc disease that has been

making the discs in my neck rupture one by one. I have a bunch of

other things wrong with me but we won't go into them...something

else with the spine is that I have problems with my lower back too

but they keep saying they will wait to deal with it when they get

all my other problems taken care of...ha ha ha

Anyway, what I wanted to say to you is get a third and fourth

opinion till you find someone who is competent to help you. In

tennis just recently, Dent had problems with his ankle - he

went to 5 doctors before a doctor found out he had a bone chip in

his ankle that was causing the problem...MRI's don't tell the whole

picture - I had one that showed no problem - a little bulging but

who can't handle a little bulging - the next showed the disc

ruptured...go figure.

I was told by my doc that he didn't want to do my last surgery that

the odds weren't in my favor...I told him I would take the odds

rather then do nothing - at least I had a chance to get better and

my quality of life did improve after the surgery - I could move my

hand above my head for the first time in over a year.

Doctors don't know everything and you have to push sometimes to get

them to do anything - if there is a chance that they can do

something they should...plus - do all the research you can yourself

so when you walk into the doctors office you are pretty

knowledgeable about the treatments and procedures that might help

you.

One last thing, Terry told me about a patch that the doctors

prescribed for her called Lupiderm...it is a lidocaine patch and I

asked my doc for a prescription for it. The first day I got them my

lower back was in excruciating pain. I could hardly stand up and

figured it would be another 3 to 4 days that I would be down again -

I put on the patch and within 1/2 mile driving I started feeling

better. The patch numbs the nerves in the area enough to dull the

pain but it doesn't take any sensations away. You might ask your

doctor for these and see if they give you any relief.

I wish you the best of luck - but please don't give up - keep

searching for answers and keep pressing for them...ask for more

opinions and you will eventually get to the doctor who is supposed

to help you.

God bless,

Althea

Report post · June 25, 2005

Dear Shirley,

Greetings to you! My name is . I have been dealing with

chronic pain since 1989, sometimes excrutiating pain due to lupus,

arthritis, osteoarthritis, fibromyalgia,connective tissue disease,

and herniated discs in the lumbar region ( " not bad enough for

surgery " ) and migraines. I'm only giving you this list to show you

that while I may not " know " exactly what you feel, I do

understand " pain. " I have seen a Pain Specialist since 1999 - he

literally saved my life. I felt like I had some dignity again,

instead of living like a caged animal to this pain, I was a valuable

human who deserved to be out of pain. (I don't know how much sense

I'm making, I've been up all night (long story) and I can tell I am

sort of babbling! Lol! I wanted to ask you to read my post about RA

Meds because at the bottom is some info re opiate pain meds (I'm sort

of a resident expert in the area) that I think you could benefit

from.

Shirley, You absolutely deserve to have your life back- to the extent

possible, and that means first and formost that your pain needs to be

under control! You deserve this! Also you might want to refer to my

post re " To the New person to the group, and those new to RA " (or

something to that effect!) because there are some coping strategies

and my " two-sense " worth re " the right MD " and how to interview to

find him or her! Sorry to keep referring you- it's just that at one

time (or two!) I sat down and really took my time to put my thoughts

down, and right now I feel like I would have a hard time thinking

thru a paper bag! Anyway, you really have my sympathy, and I hope

this helps in some way

P.S. I have never heard of " your husband making too much for you to

qualify for ssdi! " Are you sure about this? It's supposed to be based

on YOUR income as an individual (that is once you are awarded at all,

then the AMOUNT you receive, is based on your life-time income).

Love,

> HELLO EVERYBODY AND KK,

>

> I JUST WANTED TO SAY HELLO. I DONT HAVE RA(I DONT THINK) BUT KIM

> SAID I SHOULD JOIN YOUR GROUP. SO HERE GOES..

>

> I AM 49, MARRIED, AND AT 47 YRS HAD MY WHOLE LIFE AHEAD OF ME.. I

> MEAN I HAD IT ALL. MY HUSBAND AND I HAD OUR OWN SEMI TRUCK, MAKING

A

> VERY COMFORTABLE LIVING, 175K PLUS, WERE TOGHETHER 24/7, GETTING

> PAID TO BE ON VACATION YEAR ROUND, THE WHITE HOUSE, MISSING THE

> PICKET FENCE, TWO DOGS TO REPLACE THE CHILDREN I COULD NOT

> HAVE...ECT...ECT...

>

> ON MAY 5, 2003 LIFE AS WE KNEW IT HIT THE FAN. WE WERE DELIVERING

A

> LOAD OF HOUSEHOLD GOOD (MOVING IN A GREAT MILITARY FAMILY) WHEN I

> BENT OVER TO UNWRAP A PIECE OF FURNITURE, WHEN SOMETHING IN MY BACK

> SNAPPED, INSTANT AND SEVER PAIN.

>

> TO MAKE THIS VERY LONG STORY SHORT, I HAD HERNIATED L4-L5 (DOUBLE

> HERNIATION, WHICH MEANS I BLEW OUT BOTH SIDES OF THE SAME DISC). I

> WAS SEEN @ OUR GREAT ER HERE(HA!HA!) AND THE DR TOLD ME NOTHING WAS

> BROKEN AND TO RETURN TO WORK THE FOLLOWING DAY.

>

> I WENT TO SEE MY FAMILY DR, WHO ACTED AS IF I JUST WANTED SOME TIME-

> OFF ON WC. THIS WAS ON A TUESDAY. HE SET UP PT AND HAD ME RETURN

> ON FRIDAY, AS HE WAS GOING ON VACATION!! PT WAS CAUSING EVEN MORE

> PAIN, AND I JUST HURT ALL THE TIME. ON FRIDAY HE SET UP AN MRI AND

> SAID TO COME BACK A WEEK FROM MONDAY, BUT CONTINUE PT!!!

>

> MRI THE FOLLOWING TUESDAY REVEALED THE HERINATED DISC. WAS CALLED

> FROM DR'S OFC TO TELL ME TO DO NOTHING, NOT EVEN SNEEZE IF

AVOIDABLE

> AS I COULD PARALIZE MYSELF AND THEY WERE SETTING UP APPT WITH NEUR

> SURGEON. I WAITED TIL SAW MY DR THE FOLLOWING MONDAY, AT WICH TIME

> HIS ATTITUDE TOWARDS ME HAD CHANGED. COMPLETE 360...

>

> SAW NEUR SURGEON ON WED, OF THE SAME WEEK, HAD SURGERY ON THURS.

> FOR ABOUT 3-4 MOS I WAS DOING GREAT. LIFE WAS GOOD!! THEN MY WORLD

> CRASHED AGAIN. I STARTED HAVING SEVERE PAIN SHOOTING DOWN MY LEGS

> AND SEVERE PAIN IN MY TAILBONE, ESPECIALLY WHEN HAVING BM. WENT

> BACK TO NEUR DR AND HAD SECOND MRI,WICH REVEALED DISC DESICCATION

AT

> L3-4, L4-5, AND L5-S1, AND LUMBAR SPINAL STENOSIS. AT THIS TIME HE

> SET UP FCA AND SPINAL EPIDURAL STERIOD INJECTION, WHICH WERE DONE

> TWICE WITH LITTLE COMFORT.

>

> AFTER THE FCA I SAW THE NEUR SERGEON AND WAS TOLD THAT THERE WAS

> NOTHING THAT COULD BE DONE, AT WHICH TIME I ASKED FOR A SECOND

> OPINION, ALSO TURNED OUT TO BE A JOKE, BUT I WENT TO WICHITA,KS TO

> SEE ANOTHER NEUR DR WHO BASICALLY TOLD ME HE COULD OPERATE AGAING,

> BUT WAS 50/50 BE PARALIZED AND ONLY 25% DO ANYTHING FOR MY PAIN,

AND

> OH YEAH, 2YR RECOVERY TIME AND MUST QUIT SMOKING FIRST. NOT VERY

> GOOD ODDS.

>

> IN FEB 04 I WAS RELEASED BY NUER SERGEON, TOLD I WAS TOTALLY

> DISABLED, AND GO HOME AND LEARN TO LIVE WITH THIS PAIN. I AM

> CURRENTLY TAKING SOMA 350MG(3X DAILY), 1 OR 2 LORTAB 10/500MG. I

> TRIED NEURONTIN, BUT SIDE EFFECTS WERE TERRIBLE.

>

> I AM IN SEVERE PAIN ALL THE TIME, I CANNOT SIT OR STAND FOR ANY

> LENGTH OF TIME WITHOUT VERY SEVERE PAIN. HOW DOES A PERSON COPE

> WITH THIS? ANY AND ALL COMENTS WILL BE GREATLY APRECIATED!!!

> OH, AT THIS TIME I HAVE APPLIED FOR SSD, HUSBAND MAKES TOO MUCH

> MONEY FOR SSID, EVEN THOUGH WE HAVE LOST OUR TRUCK AND HAD TO FILE

> BANKRUPTCY!!!

>

> I AM VERY DEPRESSE MOST DAYS. PLEASE HELP ME!!!!!!!!!

Report post · June 26, 2005

Welcome, Loretta! Do you have RA?

I've had migraines since childhood, but they run in my family (and those

related to me who have them have no other medical problems).

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New Member

> Hello Everyone,

>

> I just found this site last night and today I decided to join in the

> group, it will be nice to have someone who knows what it is like to

> live with this disease and the pain that goes with it. They call it

> and autoimmue disease and they do not want to put a name on it yet

> because of insurance reasons and yet I started with it years ago and

> now it is where I just have pain and the pills only help so much.

>

> I also have migrains with it that I am on pills for as they would

> never end. Do any of you have them with this disease? I hope to get

> to know each of you better.

>

> Loretta

>

Report post · June 26, 2005

Loretta,

Glad to have you in the group. I have not been a

member that long myself. Everyone here is full of

information. They have been a great help to me. hope

you feel better soon.

Beth(AR)

--- teaforeight <teaforeight@...> wrote:

> Hello Everyone,

>

> I just found this site last night and today I

> decided to join in the

> group, it will be nice to have someone who knows

> what it is like to

> live with this disease and the pain that goes with

> it. They call it

> and autoimmue disease and they do not want to put a

> name on it yet

> because of insurance reasons and yet I started with

> it years ago and

> now it is where I just have pain and the pills only

> help so much.

>

> I also have migrains with it that I am on pills for

> as they would

> never end. Do any of you have them with this

> disease? I hope to get

> to know each of you better.

>

> Loretta

>

____________________________________________________

Sports

Rekindle the Rivalries. Sign up for Fantasy Football

http://football.fantasysports.

Report post · June 27, 2005

Welcome Loretta,

I'm so glad your here, and will enjoy getting to know you, Tawny

> Hello Everyone,

>

> I just found this site last night and today I decided to join in the

> group, it will be nice to have someone who knows what it is like to

> live with this disease and the pain that goes with it. They call it

> and autoimmue disease and they do not want to put a name on it yet

> because of insurance reasons and yet I started with it years ago and

> now it is where I just have pain and the pills only help so much.

>

> I also have migrains with it that I am on pills for as they would

> never end. Do any of you have them with this disease? I hope to get

> to know each of you better.

>

> Loretta

Report post · June 28, 2005

Shirley, I think if I were you that I would seek yet another opinion. Have

you been to a excellent institution such as Mayo Clinic in Rochester, MN or

s Hopkins or a place that specializes in backs like the Texas Back

Institute (http://www.texasback.com/index.htm)?

It doesn't sound as if you have adequate pain medication either.

I'm really sorry that you are suffering like this.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] NEW MEMBER

> HELLO EVERYBODY AND KK,

>

> I JUST WANTED TO SAY HELLO. I DONT HAVE RA(I DONT THINK) BUT KIM

> SAID I SHOULD JOIN YOUR GROUP. SO HERE GOES..

>

> I AM 49, MARRIED, AND AT 47 YRS HAD MY WHOLE LIFE AHEAD OF ME.. I

> MEAN I HAD IT ALL. MY HUSBAND AND I HAD OUR OWN SEMI TRUCK, MAKING A

> VERY COMFORTABLE LIVING, 175K PLUS, WERE TOGHETHER 24/7, GETTING

> PAID TO BE ON VACATION YEAR ROUND, THE WHITE HOUSE, MISSING THE

> PICKET FENCE, TWO DOGS TO REPLACE THE CHILDREN I COULD NOT

> HAVE...ECT...ECT...

>

> ON MAY 5, 2003 LIFE AS WE KNEW IT HIT THE FAN. WE WERE DELIVERING A

> LOAD OF HOUSEHOLD GOOD (MOVING IN A GREAT MILITARY FAMILY) WHEN I

> BENT OVER TO UNWRAP A PIECE OF FURNITURE, WHEN SOMETHING IN MY BACK

> SNAPPED, INSTANT AND SEVER PAIN.

>

> TO MAKE THIS VERY LONG STORY SHORT, I HAD HERNIATED L4-L5 (DOUBLE

> HERNIATION, WHICH MEANS I BLEW OUT BOTH SIDES OF THE SAME DISC). I

> WAS SEEN @ OUR GREAT ER HERE(HA!HA!) AND THE DR TOLD ME NOTHING WAS

> BROKEN AND TO RETURN TO WORK THE FOLLOWING DAY.

>

> I WENT TO SEE MY FAMILY DR, WHO ACTED AS IF I JUST WANTED SOME TIME-

> OFF ON WC. THIS WAS ON A TUESDAY. HE SET UP PT AND HAD ME RETURN

> ON FRIDAY, AS HE WAS GOING ON VACATION!! PT WAS CAUSING EVEN MORE

> PAIN, AND I JUST HURT ALL THE TIME. ON FRIDAY HE SET UP AN MRI AND

> SAID TO COME BACK A WEEK FROM MONDAY, BUT CONTINUE PT!!!

>

> MRI THE FOLLOWING TUESDAY REVEALED THE HERINATED DISC. WAS CALLED

> FROM DR'S OFC TO TELL ME TO DO NOTHING, NOT EVEN SNEEZE IF AVOIDABLE

> AS I COULD PARALIZE MYSELF AND THEY WERE SETTING UP APPT WITH NEUR

> SURGEON. I WAITED TIL SAW MY DR THE FOLLOWING MONDAY, AT WICH TIME

> HIS ATTITUDE TOWARDS ME HAD CHANGED. COMPLETE 360...

>

> SAW NEUR SURGEON ON WED, OF THE SAME WEEK, HAD SURGERY ON THURS.

> FOR ABOUT 3-4 MOS I WAS DOING GREAT. LIFE WAS GOOD!! THEN MY WORLD

> CRASHED AGAIN. I STARTED HAVING SEVERE PAIN SHOOTING DOWN MY LEGS

> AND SEVERE PAIN IN MY TAILBONE, ESPECIALLY WHEN HAVING BM. WENT

> BACK TO NEUR DR AND HAD SECOND MRI,WICH REVEALED DISC DESICCATION AT

> L3-4, L4-5, AND L5-S1, AND LUMBAR SPINAL STENOSIS. AT THIS TIME HE

> SET UP FCA AND SPINAL EPIDURAL STERIOD INJECTION, WHICH WERE DONE

> TWICE WITH LITTLE COMFORT.

>

> AFTER THE FCA I SAW THE NEUR SERGEON AND WAS TOLD THAT THERE WAS

> NOTHING THAT COULD BE DONE, AT WHICH TIME I ASKED FOR A SECOND

> OPINION, ALSO TURNED OUT TO BE A JOKE, BUT I WENT TO WICHITA,KS TO

> SEE ANOTHER NEUR DR WHO BASICALLY TOLD ME HE COULD OPERATE AGAING,

> BUT WAS 50/50 BE PARALIZED AND ONLY 25% DO ANYTHING FOR MY PAIN, AND

> OH YEAH, 2YR RECOVERY TIME AND MUST QUIT SMOKING FIRST. NOT VERY

> GOOD ODDS.

>

> IN FEB 04 I WAS RELEASED BY NUER SERGEON, TOLD I WAS TOTALLY

> DISABLED, AND GO HOME AND LEARN TO LIVE WITH THIS PAIN. I AM

> CURRENTLY TAKING SOMA 350MG(3X DAILY), 1 OR 2 LORTAB 10/500MG. I

> TRIED NEURONTIN, BUT SIDE EFFECTS WERE TERRIBLE.

>

> I AM IN SEVERE PAIN ALL THE TIME, I CANNOT SIT OR STAND FOR ANY

> LENGTH OF TIME WITHOUT VERY SEVERE PAIN. HOW DOES A PERSON COPE

> WITH THIS? ANY AND ALL COMENTS WILL BE GREATLY APRECIATED!!!

> OH, AT THIS TIME I HAVE APPLIED FOR SSD, HUSBAND MAKES TOO MUCH

> MONEY FOR SSID, EVEN THOUGH WE HAVE LOST OUR TRUCK AND HAD TO FILE

> BANKRUPTCY!!!

>

> I AM VERY DEPRESSE MOST DAYS. PLEASE HELP ME!!!!!!!!!

Report post · June 30, 2005

Hi. I'm a new member, too. Two of our 3 kids, aged 18 and 20 are at either end

of the autism spectrum. I'm just now starting the oral chelation for our

daughter, Darcy. I was referred here from another list when I said I didn't

trust doctors and was going to try the oral chelation protocol myself. I

appreciate any support or info I can get. My background is in journalism and

disability rights activism. Our daughter uses facilitated communication. We live

in Denver. Glad to find this list. -Carolyn

__________________________________________________

Report post · June 30, 2005

Hi,

Welcome to the list. I lived in Denver (between Wash. Park & DU) for a while as

did my brother and family including my nephew with DPT-triggered autism. I got

my undergrad degree in Journalism from MU and have worked in social services for

20-odd years.

S S (I'm chelating myself, but work with kids on the spectrum.)

<tt>

Hi. I'm a new member, too. Two of our 3 kids, aged 18 and 20 are at either end

of the autism spectrum. I'm just now starting the oral chelation for our

daughter, Darcy. I was referred here from another list when I said I didn't

trust doctors and was going to try the oral chelation protocol myself. I

appreciate any support or info I can get. My background is in journalism and

disability rights activism. Our daughter uses facilitated communication. We live

in Denver. Glad to find this list. -Carolyn<BR>

<BR>

__________________________________________________<BR>

Report post · July 3, 2005

Hi ,

Welcome to our group. Sorry you have been diagnosed with pa but it

sounds like you have had it awhile so it will be good to treat it.

yes.,..I get pain in my breast bone and clavicle as well as all the

ribs. I also get soft tissue pain in the whole area mentioned.

Hope the docs can help your daughter. How old is she?

regards,

marti

> I my name is shelly and was just told I had Pa one month ago. Years

> ago I was told I had fibromyalgia but the Dr. said he thought is was

> just pa all this time. He put me on 15mg methotrexate. this is making

> me sick so my primary Dr. Gave me prochlorperazine. So will see how

> that will be. I have a question. Does anyone have pain in thier brest

> bone area? My daughter has had problems with her chest hurting and is

> in the pain clinic at childrens but they cant find out what is the

> matter. I thought I read somewhere on this site about chest pain and

> with me just finding out I have PA I was just wonder right now if

this

> is what my daughter might have but in her chest instead of her hands

> and feet. any info would be great. Thanks

Report post · July 5, 2005

--- zoeena2002 <shellysmith4@...> wrote:

> Does anyone have pain in thier brest

> bone area? My daughter has had problems with her

> chest hurting and is

> in the pain clinic at childrens but they cant find

> out what is the

> matter.

It's costochondritis, inflammation of the soft tissues

in the chest. I first experienced it as a teenager.

I've been told it can be inflammation of the points

where the ribs meet the sternum, or inflammation of

the mucles and tendons of the chestwall and between

the ribs.

-

http://www.emedicine.com/emerg/topic116.htm

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

Stein

http://www.noblefusion.com/astein

http://www.livejournal.com/users/astein142/

http://darkart42.deviantart.com/

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

" Do or do not. There is no try. " - Yoda

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

" If you're tired of fighting battles with yourself

If you want to be somebody else, change your mind... "

-- Sister Hazel

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

__________________________________________________

Report post · July 6, 2005

i too have had some pain in the chest bone area. it actually protrudes a bit

and sometimes the muscles right there at the sternum spasm up and hurt really

bad. it is a sensitive area. never knew what it was.

keri

Re: [ ] new member

--- zoeena2002 <shellysmith4@...> wrote:

> Does anyone have pain in thier brest

> bone area? My daughter has had problems with her

> chest hurting and is

> in the pain clinic at childrens but they cant find

> out what is the

> matter.

It's costochondritis, inflammation of the soft tissues

in the chest. I first experienced it as a teenager.

I've been told it can be inflammation of the points

where the ribs meet the sternum, or inflammation of

the mucles and tendons of the chestwall and between

the ribs.

Report post · July 8, 2005

-Hi Marti, My daughter just turned 17 and has been going through

this for about 2 years, I just wish we could find something to help

her. shelly

-- In , " snowbound22003 "

<mlw402@a...> wrote:

> Hi ,

>

> Welcome to our group. Sorry you have been diagnosed with pa but

it

> sounds like you have had it awhile so it will be good to treat it.

>

> yes.,..I get pain in my breast bone and clavicle as well as all

the

> ribs. I also get soft tissue pain in the whole area mentioned.

>

> Hope the docs can help your daughter. How old is she?

>

> regards,

> marti

>

Report post · July 9, 2005

Hi ,

I sure hope they can find something to help your daughter also! I was

ill during my teenage years and sure can commiserate with her. I

know it is worse when it is your daughter. My mother may have

suffered more than I did.

Interesting on the acupressure.

best,

Marti

> > Hi ,

> >

> > Welcome to our group. Sorry you have been diagnosed with pa

but

> it

> > sounds like you have had it awhile so it will be good to treat it.

> >

> > yes.,..I get pain in my breast bone and clavicle as well as all

> the

> > ribs. I also get soft tissue pain in the whole area mentioned.

> >

> > Hope the docs can help your daughter. How old is she?

> >

> > regards,

> > marti

> >

Report post · July 11, 2005