Introduction

[Guest guest]

Hi, Tani, welcome to the list!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Webmedx employee

Career Step graduate, 10/02/01

Experience: 7 months

My Home Page: http://www.renesue.com

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Introduction

Hi! My name is Tani Dean and I've been lurking on the list for a couple of weeks

now. It's been very interesting, and I have enjoyed seeing how all of you help

one another. No flames. Imagine that!

I'm an MTEC student who is just about finished with my studies. I'm currently

working on the SUM advanced cardiology tapes and just have the GI/GU to go and

then I'll be finished. I'm excited and nervous. Not so nervous since I've found

this list though.

I look forward to a long and productive association with all on the list.

[Guest guest]

Welcome! )

Introduction

> Hi! My name is Tani Dean and I've been lurking on the list for a couple

of

weeks now. It's been very interesting, and I have enjoyed seeing how all of

you help one another. No flames. Imagine that!

>

> I'm an MTEC student who is just about finished with my studies. I'm

currently working on the SUM advanced cardiology tapes and just have the

GI/GU to go and then I'll be finished. I'm excited and nervous. Not so

nervous since I've found this list though.

>

> I look forward to a long and productive association with all on the list.

>

> Tani

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Congratulations and best of luck with the job hunting!!!

:-)

Introduction

Hi! My name is Tani and I've been lurking on the list for a few weeks. I

just got the news this morning that I am an MTEC grad! I'll be looking for

work starting today. It's all so confusing...different pay rates, etc.

I've enjoyed reading all of your posts and getting to " know " you. I think

that this list will become an important part of my life in the very near

future.

Tani Dean

MTEC grad!!!

[Guest guest]

Congratulations on your graduation. I wish you all the best for the future.

We're happy to have you aboard. This is a great list!

Jayni

This e-mail has been scanned with Norton Antivirus updated no more than 12

hours ago. Is your virus program up to date?

Introduction

Hi! My name is Tani and I've been lurking on the list for a few weeks. I

just got the news this morning that I am an MTEC grad!

[Guest guest]

Woohoo, Tani!!!! Congrats, you did it!

Good luck in your job search. Just be patient and go for what you really want.

You can do this too. <G>

J

MTEC *graduate*, 1 chiropractic account (so far)

old dog, new tricks, where's the bone?

[Guest guest]

Wesli,

When you are first diagnosed with PSC it is a very scarry time. You

find you have disease for which there is no cure and the standard

treatments have little effect on its progression. The good news is

that it usually progresses slowly and many here have lived with it

for 20 or more years with only occasional problems.

I first showed signs of PSC when I was 33 - high liver enzymes

(LFTs) similar to the numbers you listed (although bilirubin wasn't

elevated). I was diagnosed after an ERCP at age 42 and received a

liver transplant when I was 51. I am one of the minority of PSC

transplantees who have had PSC recur and I am again awaiting a

transplant.

Hang in there Wesli, there are things that can be done to releive

your symptoms. Stents to open blocked bile ducts, ursodiol to help

with bile flow through constricted ducts and to offer reduced risk

of colon cancer. Psc ins't the end of the world, you can use it as a

wake up call to get your priorities in order. Decide what is

important in your life and concentrate on that, let the petty stuff

slide.

We are all here to help you get through this and to support you

through your PSC experience. We are glad you found us, but sorry

that you needed to.

Best regards,

Tim R

> Hi all,

> My name is Wesli and I am 25 years old and am a mother to two young

> boys. The doctors just did an ercp yesterday and think that I may

> have psc. ...

[Guest guest]

Dear Wesli;

Welcome to the group. We are so sorry that your health problems and

potential PSC diagnosis bring you here, but we're glad that you found

us.

I'm a little confused about the conflicting lab results that you have

mentioned ... first ana-positive (I'm assuming that ana means

antinuclear antibody ... this is characteristic of type 1 autoimmune

hepatitis) and mono-positive; but then ana-negative a few months

later. I'm assuming that ama means anti-mitochondrial antibodies.

Because this is negative, this would seem to rule out primary biliary

cirrhosis. According to one study, antineutrophil cytoplasmic

antibodies (ANCA) have been reported in up to 87% of patients with

primary sclerosing cholangitis with or without ulcerative colitis.

Because your ANCA is negative this would seem to be atypical for PSC.

But, it has been observed that autoimmune hepatitis can evolve into

PSC over time, and perhaps this is what has been happening in your

case, and giving the conflicting results?? The ERCP can look normal

in autoimmune hepatitis, but then with PSC it can take on a

characteristic beeded appearance ... it sounds like your doctors were

looking for this in the last ERCP? I hope that after the radiologist

and pathologist have examined your ERCP, they did not find any such

beeding. Autoimmune hepatitis can be treated with corticosteroids.

PSC is currently being treated with ursodeoxycholic acid (UDCA;

ursodiol; Actigall). Has your doctor put you on any of these

medications?

When our son was diagnosed, we sought a second opinion, and took all

lab results, ERCP film and biospy specimens to Mayo Clinic, Rochester

MN. It was only after this second opinion that we were totally

convinced. If you have any doubt about your diagnosis, don't hesitate

to seek a second opinion.

I can understand how scared you must be about all of this. This is a

good place to share your concerns and find answers. Please feel free

to ask anything.

Best regards,

Dave R.

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

,

I just read your post to Wesli (welcome Wesli-well sort of, if you know what I mean) and I wanted to let you know how much I regret having not had the opportunity to meet you at the conference. You are truly the best of all combinations, a scientist with a heart and immense loyalty and dedication. What would we all do without you?!

With immense gratitude

Joan

Re: introduction

Dear Wesli;Welcome to the group. We are so sorry that your health problems and potential PSC diagnosis bring you here, but we're glad that you found us. I'm a little confused about the conflicting lab results that you have mentioned ... first ana-positive (I'm assuming that ana means antinuclear antibody ... this is characteristic of type 1 autoimmune hepatitis) and mono-positive; but then ana-negative a few months later. I'm assuming that ama means anti-mitochondrial antibodies. Because this is negative, this would seem to rule out primary biliary cirrhosis. According to one study, antineutrophil cytoplasmic antibodies (ANCA) have been reported in up to 87% of patients with primary sclerosing cholangitis with or without ulcerative colitis. Because your ANCA is negative this would seem to be atypical for PSC. But, it has been observed that autoimmune hepatitis can evolve into PSC over time, and perhaps this is what has been happening in your case, and giving the conflicting results?? The ERCP can look normal in autoimmune hepatitis, but then with PSC it can take on a characteristic beeded appearance ... it sounds like your doctors were looking for this in the last ERCP? I hope that after the radiologist and pathologist have examined your ERCP, they did not find any such beeding. Autoimmune hepatitis can be treated with corticosteroids. PSC is currently being treated with ursodeoxycholic acid (UDCA; ursodiol; Actigall). Has your doctor put you on any of these medications? When our son was diagnosed, we sought a second opinion, and took all lab results, ERCP film and biospy specimens to Mayo Clinic, Rochester MN. It was only after this second opinion that we were totally convinced. If you have any doubt about your diagnosis, don't hesitate to seek a second opinion.I can understand how scared you must be about all of this. This is a good place to share your concerns and find answers. Please feel free to ask anything.Best regards,Dave R.(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Dear Joan;

Thanks for your kind comments ... but really not deserved ... I wish

Aubrey was here to accept such complements! I still feel very awkward

trying to answer some of the medical questions; Aubrey was much more

skilled and qualified. But in his absence, I think we have to try our

best to light some candles rather than curse the darkness [paraphrasing

from Ricky's adopted Chinese Proverb].

Maybe we could meet next year? I think the conference is going to be an

annual event.

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Dear Wesli

Hi. I am Marti. My son was diagnosed with PSC at age 11. He is now 19 and 7 weeks ago they took 72% of my liver to transplant into him. He feels great and is out with his friends tonight. You are early in your disease. It is not a death sentence. The most important thing you can do for yourself is to be well informed. Keep a notebook about what the drs say and what you research. If insurance companies tell you that you can only go to 1 dr who isn't good cause it is their policy, do everything in your power to get the best. We were at Lahey Clinic in Birlington Mass for the surgery but our local GI dr was excellent with our son til it was time for his surgery. I am new to this PSC support group but as a 30 year ICU RN I am very good at research so had done alot of my own leg work. With your husband being military are your choices limited for health care? The meds can get expensive. Do you have a med plan? Since you were just diagnosed you could have a long time before you will

need real agressive therapy. PSC is an odd disease in that it chooses its own timetable. Do you work outside the home? Make sure you have support from family, friends and support groups. This is scary but you will win. When people offer to help take them up on it.

Marti brattsx4 wrote:

Hi all,My name is Wesli and I am 25 years old and am a mother to two youngboys. The doctors just did an ercp yesterday and think that I mayhave psc. They are sending my ercp to a radiologist and apathologist to truly diagnose me.I am so scared. This seems so unreal...I have hardly ever been sicka day in my life, that is until 7 months ago....My husband had just left to go on deployment for 6 months ( he is inthe navy ) I was really down but new I had to carry on for the kids.All of our friends through a going away party for , butbefore we went I became sick, so we went to the emergency room andthe doc said i had strep throat just by looking in the back of mymouth.He gave me some antibiotics and some pain pills, both of whichi took.Then at the going away party i had one alcoholic drink, and had torush to the

bathroom to vomit. The next morning I couldnt even move kissed me by and I just layed on the couch. I honestlythought that I was going to die. Family and friends just said that imissed but I knew then that there was more to it than that.I ended up going to the doctor soon after that and they noticed iwas yellow, so they tested me for hepatitis and sent me to a liverdoctor. Obviously I was negative for hepatitis.. The liver docsuggested that I had mono or some other type of unknown virus thatwas causing the jaundice. Then my antibody test for ana came backpos and my mono test also came back pos, so the doc said if thejaundice didnt clear up in a few months he wanted to do a liverbiopsy for autoimmune hepatitis.Of course it didnt clear up so they did the biopsy, the results saidascending cholangitis. so then they did and ercp and saw gallstonesand a bad gallbladder. so they took my stones and gallbladder

outand said that that was the problem have a nice day.two weeks later i was still yellow so they retest my blood mybilirubin was 7.2 alk pho 600 alt 143 ast 188. higher than they haveever been, well the bilirubin anyway. the others about the same.they also retested my antibodies and they were all negative. ana amaanca ...they have tested all twice since then and they werenegative. another ercp was done yesterday and i wasnt sedated enoughi heard them talking about beeding which i dont understand becausethe last ercp 3 wks ago was normal...i am terrified of leaving mychildren to grow up without a mother.thanks for listening. any word or advice would be helpful.sorry this was so long.thanks againwesli bratton__________________________________________________

[Guest guest]

Well said

Joan. We are truly lucky to have .

Thanx, Sam

-----Original

Message-----

From:

[mailto: ]On Behalf

Of joan kantor

Sent: Thursday, May 12, 2005 1:10

PM

To:

Subject: Re: Re:

introduction

,

I

just read your post to Wesli (welcome Wesli-well sort of, if you know

what I mean) and I wanted to let you know how much I regret having not had the

opportunity to meet you at the conference. You are truly the best of all

combinations, a scientist with a heart and immense loyalty and

dedication. What would we all do without you?!

With

immense gratitude

Joan

-----

Original Message -----

From:

To:

Sent: Thursday, May 12, 2005

12:46 PM

Subject:

Re: introduction

Dear Wesli;

Welcome to the group. We are so sorry that your health problems and

potential PSC diagnosis bring you here, but we're glad that you found

us.

I'm a little confused about the conflicting lab results that you have

mentioned ... first ana-positive (I'm assuming that ana means

antinuclear antibody ... this is characteristic of type 1 autoimmune

hepatitis) and mono-positive; but then ana-negative a few months

later. I'm assuming that ama means anti-mitochondrial antibodies.

Because this is negative, this would seem to rule out primary biliary

cirrhosis. According to one study, antineutrophil cytoplasmic

antibodies (ANCA) have been reported in up to 87% of patients with

primary sclerosing cholangitis with or without ulcerative colitis.

Because your ANCA is negative this would seem to be atypical for PSC.

But, it has been observed that autoimmune hepatitis can evolve into

PSC over time, and perhaps this is what has been happening in your

case, and giving the conflicting results?? The ERCP can look normal

in autoimmune hepatitis, but then with PSC it can take on a

characteristic beeded appearance ... it sounds like your doctors were

looking for this in the last ERCP? I hope that after the radiologist

and pathologist have examined your ERCP, they did not find any such

beeding. Autoimmune hepatitis can be treated with corticosteroids.

PSC is currently being treated with ursodeoxycholic acid (UDCA;

ursodiol; Actigall). Has your doctor put you on any of these

medications?

When our son was diagnosed, we sought a second opinion, and took all

lab results, ERCP film and biospy specimens to Mayo Clinic, Rochester

MN. It was only after this second opinion that we were totally

convinced. If you have any doubt about your diagnosis, don't hesitate

to seek a second opinion.

I can understand how scared you must be about all of this. This is a

good place to share your concerns and find answers. Please feel free

to ask anything.

Best regards,

Dave R.

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Wesli, you

have found the place to be as far as support and info are concerned. This is a

very active and supportive group. Much info is available and lots and lots of

advice from folks with PSC that you wont receive from the docs. My advice would

be to focus on your two boys and enjoy each moment of each day. Try not to

obsess about what you don’t know for sure, and deal with the facts. I also

recommend that you take a friend to each meeting with the doctors to help you

ask questions, take notes, etc. It always helps to have the support of another

person who can remember things the doc may say or recommend. Also take a

notepad and pencil to keep notes. Be patient and deliberate in the meetings

with the doctors. Don’t feel rushed by their schedule. When you are with them

it is YOUR time, not theirs. It helps me to write down the questions I have before

I go to the appointment and then go through the list with the doctor. If other

questions arise during the visit, write them down and ask them as well.

Good luck.

I’ll be sending good vibes your way.

Sam

Dx PSC ’01,

listed ’03 and ‘04

-----Original

Message-----

From:

[mailto: ]On Behalf

Of brattsx4

Sent: Thursday, May 12, 2005 11:07

AM

To:

Subject:

introduction

Hi all,

My name is Wesli and I am 25 years old and am a mother to two young

boys. The doctors just did an ercp yesterday and think that I may

have psc. They are sending my ercp to a radiologist and a

pathologist to truly diagnose me.

I am so scared. This seems so unreal...I have hardly ever been sick

a day in my life, that is until 7 months ago....

My husband had just left to go on deployment for 6 months ( he is in

the navy ) I was really down but new I had to carry on for the kids.

All of our friends through a going away party for , but

before we went I became sick, so we went to the emergency room and

the doc said i had strep throat just by looking in the back of my

mouth.He gave me some antibiotics and some pain pills, both of which

i took.

Then at the going away party i had one alcoholic drink, and had to

rush to the bathroom to vomit. The next morning I couldnt even move

kissed me by and I just layed on the couch. I honestly

thought that I was going to die. Family and friends just said that i

missed but I knew then that there was more to it than that.

I ended up going to the doctor soon after that and they noticed i

was yellow, so they tested me for hepatitis and sent me to a liver

doctor. Obviously I was negative for hepatitis.. The liver doc

suggested that I had mono or some other type of unknown virus that

was causing the jaundice. Then my antibody test for ana came back

pos and my mono test also came back pos, so the doc said if the

jaundice didnt clear up in a few months he wanted to do a liver

biopsy for autoimmune hepatitis.

Of course it didnt clear up so they did the biopsy, the results said

ascending cholangitis. so then they did and ercp and saw gallstones

and a bad gallbladder. so they took my stones and gallbladder out

and said that that was the problem have a nice day.

two weeks later i was still yellow so they retest my blood my

bilirubin was 7.2 alk pho 600 alt 143 ast 188. higher than they have

ever been, well the bilirubin anyway. the others about the same.

they also retested my antibodies and they were all negative. ana ama

anca ...they have tested all twice since then and they were

negative. another ercp was done yesterday and i wasnt sedated enough

i heard them talking about beeding which i dont understand because

the last ercp 3 wks ago was normal...i am terrified of leaving my

children to grow up without a mother.

thanks for listening. any word or advice would be helpful.

sorry this was so long.

thanks again

wesli bratton

[Guest guest]

Tim, I

know this was sent to Wesli, but it was helpful to me too. Thanks. Sam

-----Original

Message-----

From:

[mailto: ]On Behalf

Of Tim Romlein

Sent: Thursday, May 12, 2005 12:07

PM

To:

Subject: Re:

introduction

Wesli,

When you are first diagnosed with PSC it is a very scarry time. You

find you have disease for which there is no cure and the standard

treatments have little effect on its progression. The good news is

that it usually progresses slowly and many here have lived with it

for 20 or more years with only occasional problems.

I first showed signs of PSC when I was 33 - high liver enzymes

(LFTs) similar to the numbers you listed (although bilirubin wasn't

elevated). I was diagnosed after an ERCP at age 42 and received a

liver transplant when I was 51. I am one of the minority of PSC

transplantees who have had PSC recur and I am again awaiting a

transplant.

Hang in there Wesli, there are things that can be done to releive

your symptoms. Stents to open blocked bile ducts, ursodiol to help

with bile flow through constricted ducts and to offer reduced risk

of colon cancer. Psc ins't the end of the world, you can use it as a

wake up call to get your priorities in order. Decide what is

important in your life and concentrate on that, let the petty stuff

slide.

We are all here to help you get through this and to support you

through your PSC experience. We are glad you found us, but sorry

that you needed to.

Best regards,

Tim R

> Hi all,

> My name is Wesli and I am 25 years old and am a mother to two young

> boys. The doctors just did an ercp yesterday and think that I may

> have psc. ...

[Guest guest]

, you

are MUCH too modest. I agree with Bill Wise, you have a BIG brain and a BIGGER

heart.Sam

-----Original

Message-----

From:

[mailto: ]On Behalf

Of

Sent: Thursday, May 12, 2005 10:26

PM

To:

Subject: Re:

introduction

Dear Joan;

Thanks for your kind comments ... but really not deserved ... I wish

Aubrey was here to accept such complements! I still feel very awkward

trying to answer some of the medical questions; Aubrey was much more

skilled and qualified. But in his absence, I think we have to try our

best to light some candles rather than curse the darkness [paraphrasing

from Ricky's adopted Chinese Proverb].

Maybe we could meet next year? I think the conference is going to be an

annual event.

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Dear Wesli

I'm so sorry for all you have been through and I know that you are

scared. This group will help you as much as possible and we can give

you more information once you are definitely diagnosed. If you have PSC

then you have come to the right place.

Please let us know the results of your ERCP. In the meantime I hope

that you have some family around to help you with the kids and your

medical visits. If not , maybe you could ask some friends to help you

out right now.

Should you have PSC you can start by going to our website and reading

our FAQ's page.

The web site is

www.pscpartners.org

Click on psc literature and then on FAQ's

Feel free to post your questions here and we will try to answer them.

Best regards

Lee mother of Bill 22 PSC/UC 06/04

> Hi all,

> My name is Wesli and I am 25 years old and am a mother to two young

> boys. The doctors just did an ercp yesterday and think that I may

> have psc. They are sending my ercp to a radiologist and a

> pathologist to truly diagnose me.

> I am so scared. This seems so unreal...I have hardly ever been sick

> a day in my life, that is until 7 months ago....

>

>

>

[Guest guest]

Joan,

I just wanted to let you know that my younger son came home from

college yesterday and showed us a video of the speech he gave in class

on PSC Partners. He started off his speech with your poem!! I didn't

know about this. I hope that you don't mind but he did a great job.

Thanks.

Lee

[Guest guest]

, you

have found the place to be. I just read all the responses to Wesli and realized

(Again) what a fabulous thing this support group is. You are in the right

place.

I

frequently have an “upset system” as many PSCers do. Just keep reading the posts

and you will get helpful hints. In the meantime, enjoy every day, be proactive,

learn as much as you can and come here often. Many docs see few cases of PSC

because it is so rare. That is one of the values of this group, you are in

contact with “old hands” at PSC. These folks are knowledgeable, understanding

and supportive.

Sam

Dx PSC ’01,

listed ‘03

-----Original

Message-----

From:

[mailto: ]On Behalf

Of jamalast

Sent: Friday, May 13, 2005 2:48 AM

To:

Subject:

Introduction

Hello everyone, my name is , I am 39yo mother of two and I

just

found this support group for PSC. I was diagnosed 2 years ago with PSC

and have been overall a lot better since I started Ursofalk. However

for the last few months I have been getting a lot of bowel upsets and

stomach pains, nausea etc. I have irritable bowel as well, but it

seems that the symptoms have got drastically worse lately. My doctor

has told me to go on to low fat diet and eliminate lactose, which is

not a big change to how I've been eating before. I am otherwise very

fit and don't want to loose weight. I have learned that with PSC often

an inflammatory bowel disease is associated, and I am thinking if my

symptoms are a sign of that, because I seem to have an upset system

most of the time. I was wondering if there is anyone who has

experienced something similar and what advice you've been given by

your doctor? I really appreciate hearing from your experience, I don't

personally know anyone who has PSC and it's sometimes difficult to

explain to people what is going on. I feel I rather not. Kind regards,

[Guest guest]

You are right about Drs not being familiar with the disease. When my son was diagnosed at 11 we were told that children never get the disease. When we finally found Boston Children's they said of course Children get it. had years of mysterious abdomenal pain. no one could figure out what caused it. He has Chrons but never has problems with it. I think the PSC was the problem but could not prove it. Though 's tx was only 7 weeks ago he feels the best he was felt in years.

Marti (mother of 19yrs old, tx 3/23/05) "E. Anne Edney" wrote:

, you have found the place to be. I just read all the responses to Wesli and realized (Again) what a fabulous thing this support group is. You are in the right place.

I frequently have an “upset system” as many PSCers do. Just keep reading the posts and you will get helpful hints. In the meantime, enjoy every day, be proactive, learn as much as you can and come here often. Many docs see few cases of PSC because it is so rare. That is one of the values of this group, you are in contact with “old hands” at PSC. These folks are knowledgeable, understanding and supportive.

Sam

Dx PSC ’01, listed ‘03

-----Original Message-----From: [mailto: ]On Behalf Of jamalastSent: Friday, May 13, 2005 2:48 AMTo: Subject: Introduction

Hello everyone, my name is , I am 39yo mother of two and I just found this support group for PSC. I was diagnosed 2 years ago with PSC and have been overall a lot better since I started Ursofalk. However for the last few months I have been getting a lot of bowel upsets and stomach pains, nausea etc. I have irritable bowel as well, but it seems that the symptoms have got drastically worse lately. My doctor has told me to go on to low fat diet and eliminate lactose, which is not a big change to how I've been eating before. I am otherwise very fit

and don't want to loose weight. I have learned that with PSC often an inflammatory bowel disease is associated, and I am thinking if my symptoms are a sign of that, because I seem to have an upset system most of the time. I was wondering if there is anyone who has experienced something similar and what advice you've been given by your doctor? I really appreciate hearing from your experience, I don't personally know anyone who has PSC and it's sometimes difficult to explain to people what is going on. I feel I rather not. Kind regards, __________________________________________________

[Guest guest]

i am terrified of leaving mychildren to grow up without a mother.

Hello Wesli...

I just read your post...I only check the posts once in a while and I hardly ever post myself. I too had the same fears as I was dx with PSC only 7 months after my son was born (he is now 7) when I was 28 years old. I am mostly asymptomatic now thankfully. As I am sure you know by now you are not alone. I relied heavily on the info I gained from this group back in 1999 when 1st dx and it really helped. Hang in there!!! And god bless your husband while he is away.

Dawn

(UC, PSC)

[Guest guest]

Hi Bren welcome to this very friendly group, my name is and I live in the

united kingdom, I have 2 daughters aged 12 & 13,

I was married to an abusive man I was with him for 10 to scared to leave him, he

pushed me over in the garden and I smashed my back on a wooden poll,

I got diagnosed with cps, I'm also on cymbalta 120mg plus amitryptaline 150mg,

sorry to hear about all your pains and it's lovely to know you have a supportive

husband

x

On 3 Feb 2011, at 05:25, " constantly.changing.bren@... "

wrote:

> Hello all,

> My name is Olsen, but you all can call me Bren.

[Guest guest]

Hi Tammy,

Nice to meet you. I live in northern Calif. Are you near by? You don't

have to answer that.

I tried going to a Chronic Pain group here in the area

and I just didn't click with them, plus I could never be sure that I would

make the group meeting. I hate that part about my pain.

Sometimes when it

kicks in big time, I just plain get sick and can't keep any of my

appointments. That's why I don't take on any responsibilities that I don't

already have anymore.

Today was beautiful outside. But it took me a long time to get it in gear.

I had had restless leg going on most of the night. I fell into a light sleep

around 4:30am and then woke up in extreme pain at 6:00am. I took my muscle

relaxer and a pain pill, put the heating pad between my shoulder blades, ate

some toast.

About 2 hours later, I felt like I could go back to sleep, went

back to bed, but couldn't sleep, UG!!

Bren

Tami wrote:

(((((((((Bren))))) hi and welcome! Wow we have alot in common!

[Guest guest]

Welcome, Darlyene,

I am sorry you are in so much pain but I am glad to meet you. I have prayed

that same prayer as you so know that you are not alone. At least here in this

group you are with people who are fighting the same battles.

Becky

[Guest guest]

Hello All,

I wrote this intro yesterday (Monday), but am sending it today. So, anywhere

it says " yesterday " really means Sunday, and anywhere it says " today " really

means yesterday (Monday).

I am 26 years old and was recently diagnosed by my neurologist with spinal

osteoarthritis and degenerative disc disease. I have sacroiliitis as well,

due to the osteoarthritis. The scaroiliac pain, I have had for about five

years. Recently it has been causing me so much pain that I cannot stand in

one spot for more than a few minutes (e.g., to cook or wash dishes) without

becoming in excruciating pain. Also, beginning last October (2010), after a

double-all-nighter 48-hour paper-writing marathon at my computer, my neck

began to hurt severely and hasn't stopped since.

I began seeing a chiropractor for the first time this past Monday. I saw my

him Friday morning and he showed me the x-rays he took of my spine this

Wednesday. Apparently, my spine is moderately out of alignment at my lower

back, and severely out of alignment in my neck. My pelvis is tilted 5

degrees left-to-right, and my lumbar spine is curved 15 degrees

front-to-back in the opposite direction from the direction it should be

going. My neck (cervical spine) is much worse. It is tilted about 7 degrees

left-to-right, and 44 (forty-four) degrees front-to-back in the opposite

direction from the direction it should be going. (The neck misalignment is

fairly new (I am guessing because it only started hurting this past October,

although that doesn't necessarily mean it's new), and I am guessing that it

has gotten much worse recently and that THAT is the cause of a very severe

migraine which I have been having for the past month.)

He (my chiropractor) adjusted me a little bit Friday morning for the first

time. Up until last night, I was still in excruciating pain all along my

spine, which is usually not that bad but became so on Thursday. My head felt

much better Saturday afternoon than it did that morning and Friday

night--almost well enough for me to work and study, even--except it was the

stupid back pain that was making me feel miserable.

I am also terribly worried that I have a herniated disc somewhere along my

spine, probably in my cervical spine (neck). This is because I have been

having excruciating nerve pain shooting down both of my buttocks and the

outside of my upper legs, especially when I lie on my sides or sit with my

legs crossed. I also have been having nerve pain shooting down the outside

of my left arm, which is what makes me think it's in my neck and not in my

thoracic spine. I am pretty sure it is not in my lumbar spine because I just

had an MRI of that area back in February, and my neurologist did not mention

any problems aside from disc degeneration.

I left a message for Dr. B's (my neurologist's) assistant around 2:40pm on

Friday to see if he (Dr. would refer me to a place called the Community

Spine Center, so that I don't have to go to the Center for Pain Management,

for the chronic pain I am in from spinal osteoarthritis and degenerative

disc disease, which are apparently the cause of the pain in my neck and

lower back. (I don't want to go to the Center for Pain Management because I

have heard horrible, horrible things about them, including what I read on

Angie's List. I have read much more positive things about the Community

Spine Center on Angie's List, PLUS they are through a local hospital whom I

trust.)

Alternatively, I could go to a different pain management center downtown (I

live almost in the suburbs), although they don't usually prescribe pain meds

(e.g., lortabs/vicodin, darvocet, percocet, etc.--stuff I might need).

Instead, they try to work with the referring physician and have that doctor

(in this case, it would be Dr. , but I don't know if he would be willing

to do that. He might, though.

The only other reason why I wouldn't want to go to the downtown clinic is

because I'm under the impression that it takes forever to get in, even

though on their website it says that it takes as little as a few days. Last

time I was referred there, over a year ago, they said I wouldn't hear from

someone for 12 weeks (four months)!!! Then 12 weeks rolled around and

passed, and I NEVER heard from someone. Then the pain got better, so I

didn't call to get back in, which was stupid, because now the pain is

back--and much, much worse. Fortunately, I think I could get in quicker this

time because this time my referring physician would be Dr. B, not the other

doctor who referred me last time (he's an orthopaedist; I don't even

remember his name)--and Dr. B is in the downtown pain center's hospital

" network " , whereas the orthopaedist is not.

Yesterday, I felt somewhat better spinally (if that is a word) speaking,

although my back still hurt, and my neck was killing me. My head hurt about

the same as it did the day before: about a 4-5 on a 0-10 scale. Right now,

my back feel's better, but my neck is still killing me (but it always is).

My head pain is fluctuating between a 4 and a 7. Also, the nerve pain down

the outside of my upper legs and in my buttocks is back, although not as

severe as it was on Saturday. I am going to tell this to Dr. M, my

chiropractor, whom I see at 3pm this afternoon...

It is also worth mentioning that a collagen binding gene mutation runs in my

family on my mother's side. Her father has it and passed it on to all three

of his children (my mother and her two sisters, my aunts), and my mother

passed it to all her children (my brother and myself). Both my mother (53

years old) and brother (23 years old) have had herniated discs in the past,

and my brother still has sciatica from his herniated disc. This is probably

the cause of my disc degeneration and osteoarthritis, and also makes it not

surprising that I could have a herniated disc...

Anyway, I think that that is all I have for my introduction. Oh, I am also a

student attending university where I live (Indiana, USA). I am currently

pursuing my BS in Psychology and Mathematics. I live on my own with my two

cats.

Thanks for reading, and it will be nice to get some support from other (back

and neck) pain sufferers.

Sincerely,

Jennfier e.h.

[Guest guest]

> E. Hyland wrote:

>

> I am 26 years old and was recently diagnosed by my neurologist with spinal

> osteoarthritis and degenerative disc disease. I have sacroiliitis as well,

> due to the osteoarthritis. The scaroiliac pain, I have had for about five

> years. Recently it has been causing me so much pain that I cannot stand in

> one spot for more than a few minutes (e.g., to cook or wash dishes) without

> becoming in excruciating pain. Also, beginning last October (2010), after a

> double-all-nighter 48-hour paper-writing marathon at my computer, my neck

,

Greetings from a fellow sacro iliac sufferer. I had a misaligned sacral iliac

joint after an automobile accident which i pressed down on the brake so hard, I

felt it jammed my leg up my hip. My doctors thought it was my back as I just

had three level spinal fusion for degenerative disc disease and three of my

discs were disinergrated and I was bone on bone. I have rods and screws and BAK

cages for vertebrae.

Seven months after this accident and months of pain, I went to a myofascial

physical therapist and she told me my sacral iliac joint was misaligned and it

took a month of therapy to get it back in place.

She told me that sacral iliac syndrome correlates piriformis syndrome and

sciatica and there are many articles on the web to verify this. She states when

I walk, my SI joint is hypermobility and shears against my piriformis muscle and

causes sciatica also. These muscles are all right there together causing a

" triangle of BUTT pain " I cannot sit on my butt, I have to lie on my left side

to get relief. I also have a sacral iliac belt I use to immobilize my SI joints

so they do not do that muscle shearing.

Here are a couple of websites:

http://wehelpwhathurts.homestead.com/sacroiliacpain.html and you can go to Spine

Health. If I did not have the pain in the butt, I sure could do more. Ask

about a sacral iliac belt when you go back and see what they say. I hope the

best for you and let us know how it goes.

This site shows which level of the spine effects what area :

http://www.chirosite.com/Flash/ChiroPath/chiropath.html

http://chiropracticcenteronline.com/no-back-pain/index.php/forms-facts/interacti\

ve-spine/

I hope that you get some pain relief and please check your blood pressure as it

can cause head pain. I kept a pain dairy and you can find one on the American

Pain Foundation, under Target Pain Notebook and they have a Resource Notebook

that is great also. This way it is written down and he can look at the pain

chart and see when your pain is worse and why. Let us know what you find out.

Bennie

Bennie