new member

[Guest guest]

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!!!!!!!!!

[Guest guest]

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!!!!!!!!!

[Guest guest]

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

[Guest guest]

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!!!!!!!!!

[Guest guest]

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

>

[Guest guest]

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.

[Guest guest]

Welcome Loretta,

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

--- In , " teaforeight " <teaforeight@y...>

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

[Guest guest]

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!!!!!!!!!

[Guest guest]

Welcome Dawn. So sorry for all you've been through especially at such

a young age. To have your doctor take away your pain medicine should

be illegal.

Is your arm problem Lymphedema? My friend had Lymphedema in her arm

after a mastectomy. She has to put a pressure cuff on her arm several

times during the day. It's no fun.

a

On Jul 28, 2005, at 2:15 AM, Dawn wrote:

> Hi,  I am Dawn 36 years old and no children, with exception to my fur

> babies. 

> I was diagnosed with fibromyalgia in 95 after slipping on ice and

> injuring my back, thru all the numerous test to rule out other

> medical issues that could be causing all the pain they discovered

> gall-stones and ultimately removed my gall bladder. 

> While my body was adjusting to the change I lost a tremendous amount

> of weight but ended up regaining it tenfold, a few years later I went

> thru a bout with rheumatic fever and a lumpectomy that left my right

> (dominant) arm messed up.  Prior to being diagnosed with fibromyalgia

> I had pain issues and had been tested for arthritis and lupus several

> times, lupus primarily because my mother has it. 

> My husband was supportive thru the back injury but when it never went

> away we started having problems.  I did eventually become employed

> again.  I had a very good doctor who at times would wait after the

> office was closed to give me cortizone injections and spinal

> manipulations while I was attending the police academy, I never would

> have made it thru the academy and stayed gainfully employed had it

> not been for him. 

> After the lumpectomy I lost my job with the police department, I

> wasn't able to lift my duty belt because of the arm issues and quite

> frankly it wasn't a safe situation to be in with a dominant arm

> nearly useless.  At any given moment I would drop an item I was

> holding and had no control over it.  Things got really bad between my

> husband and I, he was so often gone leaving me alone to deal with

> things and I suppose that was his way of dealing with things.  After

> he fractured my leg during one of our arguments I divorced him he is

> still around and helps out but nothing is the same and never will be

> again which saddens me because we use to be inseparable most of the

> time.

> I take daily Fluoxetine 60mg for depression, 300mg Ranitidine for the

> acid the other medication causes, 150mg Indomethacin for pain, 1800mb

> Gabapentin for pain, 25mg Hydrochlorothiazide for edema, 10mg

> Simvastatin for cholesterol, 200mg Trazodone for sleep, calcium and a

> daily vitamin.  I use to take Hydrocodone at night to reduce the pain

> so the Trazodone can work.  The new doctor at my clinic took the

> Hydrocodone away very recently stating she would discuss something

> over the counter such as Ibupropen before she will discuss giving me

> the hydrocone back and needless to say I am getting very little sleep

> am averaging around 6 hours of sleep per 3 days. Some days I get more

> just depends on the weather, my activities and emotional stress.  I

> tried to tell the inhumane WITCH that if ibuprophen worked I would be

> taking it.

>

> I don't like to take medications and for several years I tried to get

> by without it or very little of it.

>

> Well this is pretty long and I have probably put some of you to

> sleep, but hey thats a good thing isn't it?  LOL

>

> Hugz

> Dawn

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi a,

Thanks for the welcome. I am going to go back to my other Doctor to

remedy the problem with the pain meds.

As far as my arm I have biciphedus (sp?) tendonitus and problems with

the rotator cuff. They removed a suspicious lump from my right breast

and during the procedure over extended my arm. My doctor told me that

the arm is put into a device that they can basically ratchet the arm

out to pull tight the breast tissue for the procedure and he said that

it wasn't uncommon for people to have pain in the rotator cuff after

the procedure but my problems weren't normal. My hand and arm was

changing different colors, lots of swelling and severe shooting pain

from the sholder down and sometimes it radiated into the shoulder

blade area and I had no control over my hand at times. I could be

holding something and just drop it the most embarrasing moment was

when I was leaving a restaraunt and I dropped the full cup of soda I

was holding right at the door...LOL

I am not sure what Lymphedema is but I will pray for relief for your friend..

Hugz

Dawn

On 7/31/05, a <a54@...> wrote:

> Welcome Dawn. So sorry for all you've been through especially at such

> a young age. To have your doctor take away your pain medicine should

> be illegal.

> Is your arm problem Lymphedema? My friend had Lymphedema in her arm

> after a mastectomy. She has to put a pressure cuff on her arm several

> times during the day. It's no fun.

>

> a

[Guest guest]

How awful! It sounds brutal and barbaric. I can't believe there isn't

a better way to do the procedure without ripping your arm apart so

badly that it cost you your job as well as the debilitating pain.

Lymphedema occurs in breast cancer patients when surgeons remove lymph

nodes and vessels from the underarm. Removing lymph vessels and nodes

alters the way fluid drains and so the arm fills with fluid. I posted

an informative link to the group.

I'm glad you have another doctor that will help you with the pain meds.

I know what it's like to have a doctor not willing to prescribe.

I now have one that believes in prescribing pain meds.

a

On Jul 31, 2005, at 2:18 PM, Dawn Blevins wrote:

> Hi a,

> Thanks for the welcome.  I am going to go back to my other Doctor to

> remedy the problem with the pain meds.

>

> As far as my arm I have biciphedus (sp?) tendonitus and problems with

> the rotator cuff.  They removed a suspicious lump from my right breast

> and during the procedure over extended my arm.  My doctor told me that

> the arm is put into a device that they can basically ratchet the arm

> out to pull tight the breast tissue for the procedure and he said that

> it wasn't uncommon for people to have pain in the rotator cuff after

> the procedure but my problems weren't normal.  My hand and arm was

> changing different colors, lots of swelling and severe shooting pain

> from the sholder down and sometimes it radiated into the shoulder

> blade area and I had no control over my hand at times.  I could be

> holding something and just drop it the most embarrasing moment was

> when I was leaving a restaraunt and I dropped the full cup of soda I

> was holding right at the door...LOL

>

> I am not sure what Lymphedema is but I will pray for relief for your

> friend..

>

> Hugz

> Dawn

>

> On 7/31/05, a <a54@...> wrote:

> > Welcome Dawn.  So sorry for all you've been through especially at

> such

> > a young age.  To have your doctor take away your pain medicine

> should

> > be illegal.

> > Is your arm problem Lymphedema?  My friend had Lymphedema in her arm

> > after a mastectomy.  She has to put a pressure cuff on her arm

> several

> > times during the day.  It's no fun.

> >

> > a

>

>

>

[Guest guest]

Dear Dawn, welcome to the group, you are in the right

place for support. I am fairly new here myself and

these are very caring and supportive people Im sorry

about what happened between you and your husband, many

times I have seen one spouse back far away from the

other when they become ill, or have a long term

condition. It brings people's true character flaws out

I believe. Feel free to email me any time, I am a good

listener, and enjoy hearing from other people.

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

The problem with your friends arm sounds horrible and is something I

can relate to. When my ex fractured my leg it was the shin bone. He

threw a leaded crystal ashtray at me. The blow to that area caused

alot of damage to the tissue and veins and the fluid and blood had no

place to go except down. My foot was green, yellow, red and purple

and huge from all the fluid and blood that was more painful than the

fracture itself.

When this took place my husband and I had been argueing and he had

said to me that he couldn't stand to look at me or hear my voice, I

was holding the ashtray at the time and just dropped it at his

words...I guess it was just shock and hurt but he picked up the

ashtray and said " now look at the mess you made as if things weren't

bad enough around here " and he threw the ashtray at me.

Hugz

Dawn

On 7/31/05, a <a54@...> wrote:

> How awful! It sounds brutal and barbaric. I can't believe there isn't

> a better way to do the procedure without ripping your arm apart so

> badly that it cost you your job as well as the debilitating pain.

> Lymphedema occurs in breast cancer patients when surgeons remove lymph

> nodes and vessels from the underarm. Removing lymph vessels and nodes

> alters the way fluid drains and so the arm fills with fluid. I posted

> an informative link to the group.

> I'm glad you have another doctor that will help you with the pain meds.

> I know what it's like to have a doctor not willing to prescribe.

> I now have one that believes in prescribing pain meds.

>

> a

>

>

>

> On Jul 31, 2005, at 2:18 PM, Dawn Blevins wrote:

>

> > Hi a,

> > Thanks for the welcome. I am going to go back to my other Doctor to

> > remedy the problem with the pain meds.

> >

> > As far as my arm I have biciphedus (sp?) tendonitus and problems with

> > the rotator cuff. They removed a suspicious lump from my right breast

> > and during the procedure over extended my arm. My doctor told me that

> > the arm is put into a device that they can basically ratchet the arm

> > out to pull tight the breast tissue for the procedure and he said that

> > it wasn't uncommon for people to have pain in the rotator cuff after

> > the procedure but my problems weren't normal. My hand and arm was

> > changing different colors, lots of swelling and severe shooting pain

> > from the sholder down and sometimes it radiated into the shoulder

> > blade area and I had no control over my hand at times. I could be

> > holding something and just drop it the most embarrasing moment was

> > when I was leaving a restaraunt and I dropped the full cup of soda I

> > was holding right at the door...LOL

> >

> > I am not sure what Lymphedema is but I will pray for relief for your

> > friend..

> >

> > Hugz

> > Dawn

> >

> > On 7/31/05, a <a54@...> wrote:

> > > Welcome Dawn. So sorry for all you've been through especially at

> > such

> > > a young age. To have your doctor take away your pain medicine

> > should

> > > be illegal.

> > > Is your arm problem Lymphedema? My friend had Lymphedema in her arm

> > > after a mastectomy. She has to put a pressure cuff on her arm

> > several

> > > times during the day. It's no fun.

> > >

> > > a

> >

> >

> >

[Guest guest]

Thanks so much this means alot to me.

Hugz

Dawn

On 7/31/05, Davenport <jennay43334@...> wrote:

> Dear Dawn, welcome to the group, you are in the right

> place for support. I am fairly new here myself and

> these are very caring and supportive people Im sorry

> about what happened between you and your husband, many

> times I have seen one spouse back far away from the

> other when they become ill, or have a long term

> condition. It brings people's true character flaws out

> I believe. Feel free to email me any time, I am a good

> listener, and enjoy hearing from other people.

>

>

>

>

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

>

>

>

>

>

>

[Guest guest]

Dawn,

I'm really sorry your husband did this to you. He is part of your past

that will always be painful memories.

I'm glad you divorced him. He didn't deserve you.

a

On Jul 31, 2005, at 4:11 PM, Dawn Blevins wrote:

> The problem with your friends arm sounds horrible and is something I

> can relate to.  When my ex fractured my leg it was the shin bone.  He

> threw a leaded crystal ashtray at me.  The blow to that area caused

> alot of damage to the tissue and veins and the fluid and blood had no

> place to go except down.  My foot was green, yellow, red and purple

> and huge from all the fluid and blood that was more painful than the

> fracture itself.

>

> When this took place my husband and I had been argueing and he had

> said to me that he couldn't stand to look at me or hear my voice, I

> was holding the ashtray at the time and just dropped it at his

> words...I guess it was just shock and hurt but he picked up the

> ashtray and said " now look at the mess you made as if things weren't

> bad enough around here " and he threw the ashtray at me.

>

> Hugz

> Dawn

[Guest guest]

Thanks a,

Hugz

On 7/31/05, a <a54@...> wrote:

> Dawn,

>

> I'm really sorry your husband did this to you. He is part of your past

> that will always be painful memories.

> I'm glad you divorced him. He didn't deserve you.

>

> a

>

>

>

>

> On Jul 31, 2005, at 4:11 PM, Dawn Blevins wrote:

>

> > The problem with your friends arm sounds horrible and is something I

> > can relate to. When my ex fractured my leg it was the shin bone. He

> > threw a leaded crystal ashtray at me. The blow to that area caused

> > alot of damage to the tissue and veins and the fluid and blood had no

> > place to go except down. My foot was green, yellow, red and purple

> > and huge from all the fluid and blood that was more painful than the

> > fracture itself.

> >

> > When this took place my husband and I had been argueing and he had

> > said to me that he couldn't stand to look at me or hear my voice, I

> > was holding the ashtray at the time and just dropped it at his

> > words...I guess it was just shock and hurt but he picked up the

> > ashtray and said " now look at the mess you made as if things weren't

> > bad enough around here " and he threw the ashtray at me.

> >

> > Hugz

> > Dawn

>

>

[Guest guest]

Welcome Bonnie,

Sorry for your diagnosis, but glad you found us. I know it's difficult

taking so many meds. We all hate it.

Were you on folic acid with the methotrexate? Is the Humira helping?

I take Enbrel & Mtx and naproxen. That gazelle looks very interesting.

I've thought about trying it.

My exercise is done in a pool, but I'm sure I could do the gazelle.

Nice to meet you.

a

On Aug 17, 2005, at 12:51 PM, bhudick wrote:

> Hi all - my name is Bonnie, from CT - and I was diagnosed one year ago

> with RA (my RF factor was 269) - and I'm now 37 years old.

>

> It's been a rough year - was on 1000mg of Naproxen for 9 months -

> which caused bad gastritis and acid reflux, tried Methotrexate - but

> got huge mouth ulcers.

>

> Now I'm on Humira (now weekly), plus plaquinel (it didn't work alone),

> plus they are starting me on sulfasalazine plus 5 mg of predinsone, 50

> mg zoloft and for the stomach I have to take 2 prevacid, 1 zantac 150

> and 4 carafate....I " M a walking drug store and I hate it!

>

> I gained 20 or so pounds this year - and I do work out for 15 mins 5

> days/week on the Tony Little's gazelle machine -

>

> I just needed to vent - it's so hard - thanks for listening!

>

> Bonnie

>

>

>

>

>

>

>

[Guest guest]

Hi Bonnie,I'm glad you came to vent. So many of us

need this group to do just that sometimes!. You are so

young, it amazes me how many people are not very old

that have RA. I also thought at one time it was a

disease for " old " people , like granma and grandpa.

I've learned a lot, and know how frustrating the

diagnoses and the adjustments we must make in our

daily lives are. I also hate taking pills, sometimes I

wonder if they do what they are supposed to , and if

one may be affecting another. Hang in there, and feel

free to vent anytime in Missouri

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

a,

I have had a Gazelle now for over a year and live it. They sell them at

sears, Walmart and many sporting goods stores. I would check out sears to see

if they have a demo model on the sales floor that your could try. I went to

my local gym and they have the professional model which I tried before I

bought one for myself.

I got mine from HSN.com. Though check them out carefully cause they are not

all the same. The walmart version is stripped down and can only handle a

person of 250 lbs or less. The gazzelle super crosstrainer and many of the

other models can handle up to 300 lbs and have all the electronic monitoring,

cup holders and all the new workout DVDs.

Its so hot here in Texas that the Gazelle is the only way I get exercise. LOL

Toni

In a message dated 8/18/05 4:15:20 A.M. Central Daylight Time,

writes:

Date: Wed, 17 Aug 2005 23:00:17 -0400

From: a <a54@...>

Subject: Re: New Member

Welcome Bonnie,

Sorry for your diagnosis, but glad you found us. I know it's difficult

taking so many meds. We all hate it.

Were you on folic acid with the methotrexate? Is the Humira helping?

I take Enbrel & Mtx and naproxen. That gazelle looks very interesting.

I've thought about trying it.

My exercise is done in a pool, but I'm sure I could do the gazelle.

Nice to meet you.

a

[Guest guest]

Hi a - I did take folic acid and I still had a lot of problems.

I'm at 90 pills per week and Humira weekly - and it's not really

helping - Nice to meet you too! And thanks for listening.

Regards, Bonnie

>

> > Hi all - my name is Bonnie, from CT - and I was diagnosed one

year ago

> > with RA (my RF factor was 269) - and I'm now 37 years old.

> >

> > It's been a rough year - was on 1000mg of Naproxen for 9

months -

> > which caused bad gastritis and acid reflux, tried Methotrexate -

but

> > got huge mouth ulcers.

> >

> > Now I'm on Humira (now weekly), plus plaquinel (it didn't work

alone),

> > plus they are starting me on sulfasalazine plus 5 mg of

predinsone, 50

> > mg zoloft and for the stomach I have to take 2 prevacid, 1

zantac 150

> > and 4 carafate....I " M a walking drug store and I hate it!

> >

> > I gained 20 or so pounds this year - and I do work out for 15

mins 5

> > days/week on the Tony Little's gazelle machine -

> >

> > I just needed to vent - it's so hard - thanks for listening!

> >

> > Bonnie

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Bonnie,

Welcome to the group. You will learn a lot from

everyone. I hope you are feeling better. Vent anytime

you need to. We all do.

Beth(AR)

--- bhudick <bhudick@...> wrote:

> Hi all - my name is Bonnie, from CT - and I was

> diagnosed one year ago

> with RA (my RF factor was 269) - and I'm now 37

> years old.

>

> It's been a rough year - was on 1000mg of Naproxen

> for 9 months -

> which caused bad gastritis and acid reflux, tried

> Methotrexate - but

> got huge mouth ulcers.

>

> Now I'm on Humira (now weekly), plus plaquinel (it

> didn't work alone),

> plus they are starting me on sulfasalazine plus 5 mg

> of predinsone, 50

> mg zoloft and for the stomach I have to take 2

> prevacid, 1 zantac 150

> and 4 carafate....I " M a walking drug store and I

> hate it!

>

> I gained 20 or so pounds this year - and I do work

> out for 15 mins 5

> days/week on the Tony Little's gazelle machine -

>

> I just needed to vent - it's so hard - thanks for

> listening!

>

> Bonnie

>

>

>

>

>

__________________________________________________

[Guest guest]

Welcome, Bonnie!

Sorry that you have to take so many medications, but maybe some of them can

be eliminated in the future.

It's great that you are exercising.

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

Hi all - my name is Bonnie, from CT - and I was diagnosed one year ago

with RA (my RF factor was 269) - and I'm now 37 years old.

It's been a rough year - was on 1000mg of Naproxen for 9 months -

which caused bad gastritis and acid reflux, tried Methotrexate - but

got huge mouth ulcers.

Now I'm on Humira (now weekly), plus plaquinel (it didn't work alone),

plus they are starting me on sulfasalazine plus 5 mg of predinsone, 50

mg zoloft and for the stomach I have to take 2 prevacid, 1 zantac 150

and 4 carafate....I " M a walking drug store and I hate it!

I gained 20 or so pounds this year - and I do work out for 15 mins 5

days/week on the Tony Little's gazelle machine -

I just needed to vent - it's so hard - thanks for listening!

Bonnie

[Guest guest]

>

> Hi Everyone,

>

> I am new here and want to learn all I can. I have relapsing remitting

> ms. An online friend of mine started ldn for her ms. She was very

> impressed. I had heard about it a long time ago but kinda forgot about

> it until she mentioned it.

> I asked my neuro. for a script. Surprisingly she had no problem giving

> it to me. She has another patient on it. She heads alot of ms studies

> so I asked her why no one seemed to want to study ldn in a large scale

> study. She told me the bottom line was money. That ldn had been

> around a long time and had made it to the generic phase so there was

> not alot of money to be made from it. I'm not sure how accurate that

> is but it's sad to think, that something that could possible help

> people, is being shoved aside due to profit.

>

> I found a pharmacy that will compound the ldn. I am hoping it will

> help. I went the copaxone and avonex route but had to stop due to side

> effects.

>

> Take Care

>

=======

,

Make sure your compounding pharmacy does not use Calcium Carbonate as your

capsule filler, CC has at times made some people's LDN release slow and LDN must

release fast to work. The best fast release fillers for LDN are Acidophilus,

Lactose, Gelatin, Avicel.

Good luck.

Here's the LDN website if you haven't read it.

http://www.low dose naltrexone.org

[Guest guest]

Hi , Thanks for the good luck! Funny you should mention the

Calcium Carbonate. The pharmacy that is compounding it for me called

today. I had written down what fillers that were suggested here to

use in case. Well they use the calcium. I told her that the calcium

could possibly make it release slow. She claimed that it was used

because it releases slow. I gave her the addy to the homepage. I

think she was kinda put off that I would mention what to use. I will

call her in the morning but wondered what I should say? Also is

there somewhere I could get info. on side effects? The pharmacy and

neuro. feel none as the dose is so low. I am a side effect waiting

to happen. If it's rare I'll get it! What happens if it's released

slow?

Yes I have been to the homepage but need to read some more.

Thanks and Take Care

>

> ,

>

> Make sure your compounding pharmacy does not use Calcium Carbonate

as your capsule filler, CC has at times made some people's LDN

release slow and LDN must release fast to work. The best fast

release fillers for LDN are Acidophilus, Lactose, Gelatin, Avicel.

>

> Good luck.

>

> Here's the LDN website if you haven't read it.

>

> http://www.low dose naltrexone.org

>

>

>

[Guest guest]

>

> Hi , Thanks for the good luck! Funny you should mention the

> Calcium Carbonate. The pharmacy that is compounding it for me called

> today. I had written down what fillers that were suggested here to

> use in case. Well they use the calcium. I told her that the calcium

> could possibly make it release slow. She claimed that it was used

> because it releases slow. I gave her the addy to the homepage. I

> think she was kinda put off that I would mention what to use. I will

> call her in the morning but wondered what I should say? Also is

> there somewhere I could get info. on side effects? The pharmacy and

> neuro. feel none as the dose is so low. I am a side effect waiting

> to happen. If it's rare I'll get it! What happens if it's released

> slow?

> Yes I have been to the homepage but need to read some more.

>

> Thanks and Take Care

>

> >

> > ,

> >

> > Make sure your compounding pharmacy does not use Calcium Carbonate

> as your capsule filler, CC has at times made some people's LDN

> release slow and LDN must release fast to work. The best fast

> release fillers for LDN are Acidophilus, Lactose, Gelatin, Avicel.

> >

> > Good luck.

> >

> > Here's the LDN website if you haven't read it.

> >

> > http://www.low dose naltrexone.org

> >

> >

> >

>

==========

If LDN releases slow then it does not work. LDN must release fast to work. Ask

them to use Acidophilus as your fast release filler.

For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the

UK who has MS & uses LDN himself explains why the temporary increase in MS

symptoms.

When starting this LDN(Low Dose Naltrexone) therapy in the treatment of MS,

there may also be some initial transient, though temporary, increase in MS

symptoms.

Experience in using this method has demonstrated most commonly, such as

disturbed sleep, occasionally with vivid, bizarre and disturbing dreams,

tiredness, fatigue, spasm and pain. These increased symptoms would not normally

be expected to last more than seven to ten days.

Rarely, other transient symptoms have included more severe pain and spasm,

headache, diarrhea or vomiting. These additional symptoms would appear to be

associated with the previous frequent use of strong analgesics, which

effectively create an addiction and dependency, thus increasing the body's

sensitivity to pain. This temporary increase in symptoms may also perhaps be

explained when we consider the manner in which this drug is expected to work

Dr. M. R. Lawrence

Posted by