Hello

[Guest guest]

Thank you Marsha. Your kindness is appreciated

-- Re: hello

susan,

i think you just came across some incredibly stupid people. that is

unfortunate in a support group. i have gone thru many moments of despair.

my heart

goes out to you and i am glad you are with us now.

marsha

[Guest guest]

thank you everyone who responded about the right kind of bed. i was set to

buy a stearns and foster that was half-price at bloomingdales and then i

realized i didn't know what kind of mattress to get. you guys have equipped me

with the information to do some research. so it might be a while before i

get a new bed.

interestingly enough, when i am having a hard time sleeping i go into the

living room and lay down on my super soft couch and my body calms down and then

i can sleep. thanks everyone, marsha

[Guest guest]

This is very wise, Marsha....best bet is find

something that works for you.

--- BLEECKERST10012@... wrote:

> thank you everyone who responded about the right

> kind of bed. i was set to

> buy a stearns and foster that was half-price at

> bloomingdales and then i

> realized i didn't know what kind of mattress to get.

> you guys have equipped me

> with the information to do some research. so it

> might be a while before i

> get a new bed.

> interestingly enough, when i am having a hard time

> sleeping i go into the

> living room and lay down on my super soft couch and

> my body calms down and then

> i can sleep. thanks everyone, marsha

>

>

> [Non-text portions of this message have been

> removed]

>

>

This message may be coming from a foreign address. If it isn't coming from

, better not click on reply. My address is johnblaisdell@...

Blaisdell

Box 310

Kearny, Az. 85237

5203637491

__________________________________________________

[Guest guest]

i've got that... but i've also got bulging discs from C4 through C7 as well, and

facet

degeneration. so, i can't isolate what cause what, but here are my symptoms:

severe shoulderblade pain

numbness, weakness and pain in my neck, shoulders, arms and hands

neck pain at the discs and vertebrae

headaches

-melanie

> I am looking for people with bulging disc at C3-C4. What have been

> your problems and symptoms . Thanks in advance.

[Guest guest]

Hi Jo Lynne

I hope you're feeling better!

[Guest guest]

>

>

I have that as well. I had shoulder blade pain, and pain in the arm pit

area. I showed arm weakness on the right side with slight loss of ROM.

~julie

i've got that... but i've also got bulging discs from C4 through C7 as

> well, and facet

> degeneration. so, i can't isolate what cause what, but here are my

> symptoms:

>

> severe shoulderblade pain

> numbness, weakness and pain in my neck, shoulders, arms and hands

> neck pain at the discs and vertebrae

> headaches

>

> -melanie

>

>

>

>

>

>

>

> > I am looking for people with bulging disc at C3-C4. What have been

> > your problems and symptoms . Thanks in advance.

>

>

>

>

>

[Guest guest]

The problem of pain originating from cervical discs is

that there is no wonderful treatment like rf to help

it..and if it does not produce paralysis, or

numbness(like in anesthetic numbness), then surgery

does not help. Facet pain can be helped with rf, but

not consistently, like 100%. And even then it is only

for a year or so. Bummer. But that is the deal.

Getting medial nerve root injections of anesthetic

agents helps prove it one way or the other, but even

those tests are less than perfect.

--- jdebolt@... wrote:

> >

> >

> I have that as well. I had shoulder blade pain, and

> pain in the arm pit

> area. I showed arm weakness on the right side with

> slight loss of ROM.

> ~julie

>

> i've got that... but i've also got bulging discs

> from C4 through C7 as

> > well, and facet

> > degeneration. so, i can't isolate what cause

> what, but here are my

> > symptoms:

> >

> > severe shoulderblade pain

> > numbness, weakness and pain in my neck,

> shoulders, arms and hands

> > neck pain at the discs and vertebrae

> > headaches

> >

> > -melanie

> >

> >

> >

> >

> >

> >

> >

> > > I am looking for people with bulging disc at

> C3-C4. What have been

> > > your problems and symptoms . Thanks in advance.

> >

> >

> >

> >

> >

[Guest guest]

Hi Perter,

I have that, but from C-1 through T-4; anf from L-1 through S-1.

Yeah, ouch! and Yikes!! A few years ago it was only C-3 through C-5

and L-3,4, L5- S-1; and DDD. There is stenosis and the foraman areas

are blocked as well.

I don't know what to say about treatment. I have a TENS, spa tub,

ultrasound; do several PT stuff, go to PT twice a week. Lidodrem

patches help. Deep tissue massage helps. Hot/cold pacs help. I just

rotate through all the 'tools' through the day.

Symptoms are the sames a stated by others. However, I get neck/face

swelling on a regular basis (makes my vision blurry and my eyeglasses

fit too snuggly); headaches from hell; cramps that feel like

appendicitis (but on the wrong side!); lots of chest/back pain

resembling heart attack (gotta pay attention to where the pain starts

and how it travels). It's a real bore. It's a good idea to keep a

pain journal- it heps you kep track of the pain and how/when it

changes; it allows you to tell your doc about the problem with

accuracy.

Problems along the way include: not lifting anything without great

care- weight doesn't matter it's the motion that causes spasms and

pain. I wear shirts that don't need tucking- that motion is too

painful. I avoid stairs, hills, long walks- they all cause/increaee

pain and spasms in the low back. I don't 'plan' on what to do

tomorrow- I wait for it to come and then decide what I can do.

A few years ago all this was sporadic, I even had several days a week

where I could function 'normal'. Now all bets are off! It's a

constant struggle trying to cope/manage this little pain in the

neck/back/legs/arms...

Beleive me, I'm only trying to answer your question and be helpful. It

all sounds prteey ugly, but these degenerative, progressive things get

there.

GBY

> I am looking for people with bulging disc at C3-C4. What have been

> your problems and symptoms . Thanks in advance.

[Guest guest]

--- Lawler <llerweatherman@...> wrote:

> I have that, but from C-1 through T-4; anf from L-1 through S-1.

> Yeah, ouch! and Yikes!! A few years ago it was only C-3 through

> C-5

> and L-3,4, L5- S-1; and DDD. There is stenosis and the foraman

> areas

> are blocked as well.

>

Hi ,

How on earth did you end up with this much damage? Were you in an

accident, or what?

Shulamit

[Guest guest]

Hello Shulamit,

Gosh! doesn't 'life happen'?!

I think some of my trouble may be heredity- my younger sister has

some disc problems. I remember having a sore back in my teen years

and the family doc just laughed it off!

When I was in the navy (1964-1971)I slipped on some spilled water

and fell to the deck below- about 8', landing on my tail bone on a

steel deck- ouch! That had me laid-up for a week. I was adamant

about getting back to work. I was in 'Nuke School' and had to

finish it successfully in order to ride a submarine. Being young,

foolish, and highly excited about riding a sub, I wasn't going to

let anything get in my way. Thankfully, I spent four years 'under

the sea'- it was by far one of the best, happiest, and exciting

times of my life.

I was rear-ended by a truck in '94, that started my serious pain,

none of the regular stuff 'worked' I was used to hot soaks to get

rid of my pain. I had started with a chiropractor in '90- who did

me worlds of good. But that truck accident did me real harm.

Slowly, over about 3 years I managed to see enough doc's to get a

realistic diagnosis. Unfortunately it was too litle too late,

things had progressed to where I could hardly get around or plan my

day. It's been a downhill free-fall since then.

In a nut shell, that's how I wound up with this whole nightmare.

Thanks for asking, and your concern. However, I am not,by far, in

as much pain as many others in this or my other support groups.

GBY

--- In spinal problems , Shulamit

>

> Hi ,

>

> How on earth did you end up with this much damage? Were you in an

> accident, or what?

>

> Shulamit

[Guest guest]

Jo Lynn

Positive thoughts and prayers have been with you. Hope you are feeling better. EllieJo Lynne <jolynne4@...> wrote:

I have been very ill and I know you think I have been ignoring all of you with a chat time.

I just cannot sit at the computer long and be in a chat. That is why I was not in 's PBC/AIH crossover chat Thurs Night.

So I wanted to tell you all that you can have a chat anytime - it is always available and if a few of you choose a time, here is the instructions on how to use Liver Support L Chat.

Go to:

/?yguid=132030220

On the left hand side of the page is "Chat" When you click on "chat" it takes you to the room.

/chat

Have a Good Weekend Everyone.

Jo Lynne__________________________________________________

[Guest guest]

Hi tcctyclk,

wow! you have been through it. Are you taking any medications? pa

can cause tingling and burning along with the pain but it could also

be something else too...i got this as a side effect from one of the

meds...along with numbness.I needed to stop the med. A grumbling gut

could be a med side effect or irritable bowel or even a form of

colitis that goes along with pa. it sounds like you will need to talk

to your rheum about these things...or go back to the nurse

practitioner if you feel more comfortable talking to her. sorry

good luck!

Marti

[Guest guest]

Your story could be mine except for the psoriasis being on my scalp. I'm

50. Enbrel has been magical for the PA but I still have the constant

diarrhea, grumbling in the guts, and the neurological symptoms. I never

played sports because of these idiosyncrasies also. I wasn't diagnosed

until 6 years ago when I suddenly started losing the use of my hands do to

joint inflammation. Have you tried Klonopin. It seems to help me in a low

dose. Cheers Ronnie E.

[Guest guest]

I can't answer with much authority, but I've heard that PA and other

autoimmune diseases can be the result of a viral infection gone

haywire. In that sense, it seems that all kinds of symptoms can fall

into the category of this disease. In retrospect, I had a period

around 3 years ago when for no explainable reason I felt burning in

my legs at night, shakyness in the mornings, a painful and inflamed

sternoclavicular joint, and chronic upper respiratory problems

(smoking didn't help). Most symptoms were only on the left side. I

once said in frustration that I would one day die of " the left side

of my body " .

It's so hard to pinpoint what's what, and when the PA actually began.

What I can definitely relate to is that no medical professionals

could put it all together for a long time. It was only when I

insisted to my internist that things weren't " right " that he took my

chronic and vague complaints more seriously, put his mind to work,

and referred me to a rheumatologist.

:::::::::::::::::::::::::::::

Haleila Nusinow

H.A.N.D. Design

b. 323.655.4156

c. 323.823.4155

www.haleila.com

::::::::::::::::::::::::::::::

[Guest guest]

One thing I have learnt is that autoimmune diseases are not easy to

diagnose; once you have one you are more then likely to have another;

they consist of many symptoms that seem non specific and non life

threatening; and you will be told many times that the symptoms will

go away by their own accord before you are taken seriously. However,

to give your doctors a fair chance at diagnosing your illness/s you

need to give them every part of the puzzle.

Colin had coeliac disease, hashimotos disease and psoriatic

arthritis. His symptoms were fatigue, sore bones, fatigue, feeling

cold, fatigue, arthritis in his knees/elbows/wrist and ankles,

fatigue, hot joints and scaley hands.

We got all 3 illnesses diagnosed because we did not except that the

symptoms would go away if we went away. We changed doctors when we

were not taken seriously. We went down a lot of dead ends, thinking

that the non-resolving symptoms were the compilcations of coeliac

rather then a totally differant disease. Retrospectively it beats me

how we managed to find the 3 diagnosis's within 3 years with such

vague symptoms.

So go back and lay down all your vague symptoms to your

rheumatologist. Hope it is coeliac - if so you will find a lot of

your PA symptoms will go when you start a gluten free diet ... but

make sure you get the tests done first.

Chris

[Guest guest]

In a message dated 9/19/2005 9:05:34 P.M. Eastern Standard Time,

tcctyclk@... writes:

Like the burning and tingling in

my hands and feet and the grumbling in my guts and the constant

diarrhea. Does any one else suffer from this? And is it from the

PA?

You might want to get tested for celiac disease (gluten intolerance)...it

can cause lots of gastrointestinal distress, and can make the joint pain of PA

worse...

[Guest guest]

...

I was on my back, as have been everyone I've visited. Since sleeping

on your tummy actually hyper extends the spine, I'm guessing that

wouldn't be appropropriate in most cases.

--

>

> Thanks for the updates on Lorrie. She has been on my mind daily.

> Cam, I thought of a question for you. After surgery, the first one, do

> they actually have you on your back? Or do they have you on your

> stomach due to the fact that they just operated on your back? Wondering

> due to the fact years ago we were on a striker frame....I did not ask

> Dr.Rand this question.

> Disney was rough but I made it, now just hanging by the pool for a few

> days!!!!! Sunny and mid 80's!! I'm lovin it!!!, PA

>

[Guest guest]

,

I woke up laying on my back after both operations. I was able to be

on either side or back...and to this day have not attempted a face

down position anywhere, bed, beach...massage table. I think I could

do it now but don'tthink I could have rolled all the way over

without violating the " NO TWISTING " rule untill fairly recently.

Martha suggested, and I remembered to ask for (and got) a " draw

sheet " put on the bed for the first 2-3 days after surgery. They had

me on just a large heavy pad...but a draw sheet allows the nurses to

roll you onto your side by drawing the sheet toward them. It is a

huge help..just that little bit of roll makes it possible to move

without it being too painful. I think it is just sheet folded in

thirds...they have plenty on hand. Maybe they would have thought of

it themselves but it wasn't set up that way when I came up from

recovery.

You will probably also have to lay flat while in bed, I was not

allowed to lift the head of the bed up alone...however it was

possible to tilt the entire bed up.

I learned this is called " reverse trendellenberg (sp?) " and all the

nurses knew how to make the bed do this...but some of the aides did

not. I mention this because after you have spent as much time laying

in bed as you will...it is welcome relief to change positions and

move pressure points. Of course they will surely be getting you up

and probably as you feel like you are able, you will probably be

allowed to sit in the chair in the room. I could sit for about 10-15

minutes by day 5 after the first surgery...and they will probably

let you use the walker to go out and walk a little...once they

determined that I was safe to get in and out of bed and move around

my room I was released to go where ever I wanted while I was on the

rehab floor. I felt pretty good fairly quickly after the first

surrgery...the second surgery had a much slower bounce back for me.

Of course they torture you by removing your catheter as soon as they

can ..and then you have to get up and move!

Glad your trip went okay...and glad you are gettting the same nice

weather we are! Take care, Cam

[Guest guest]

Hi ,

I, too, was on my back. Though it sounds awful to be placed on your back, it really was okay. As Cam suggested, the "draw sheet" is a great help. Also, the hospital I was in last, Hospital For Special Surgery, placed me in my bed in the OR and the bed moved with me whereever I needed to go in the hospital, so other than being moved from the operating table to the bed while still under anesthesia, I was never "transferred" from a gurney to a bed. In effect, the bed was also the gurney. What a relief that was! The same procedure was used at Duke Hospital last year when my husband had prostate surgery. I was waiting for him in his empty hospital room and they just wheeled him right in from the recovery room on his hospital bed.

Bonnie

[ ] Re: Hello

,I woke up laying on my back after both operations. I was able to be on either side or back...and to this day have not attempted a face down position anywhere, bed, beach...massage table. I think I could do it now but don'tthink I could have rolled all the way over without violating the "NO TWISTING" rule untill fairly recently.Martha suggested, and I remembered to ask for (and got) a "draw sheet" put on the bed for the first 2-3 days after surgery. They had me on just a large heavy pad...but a draw sheet allows the nurses to roll you onto your side by drawing the sheet toward them. It is a huge help..just that little bit of roll makes it possible to move without it being too painful. I think it is just sheet folded in thirds...they have plenty on hand. Maybe they would have thought of it themselves but it wasn't set up that way when I came up from recovery.You will probably also have to lay flat while in bed, I was not allowed to lift the head of the bed up alone...however it was possible to tilt the entire bed up.I learned this is called "reverse trendellenberg (sp?)" and all the nurses knew how to make the bed do this...but some of the aides did not. I mention this because after you have spent as much time laying in bed as you will...it is welcome relief to change positions and move pressure points. Of course they will surely be getting you up and probably as you feel like you are able, you will probably be allowed to sit in the chair in the room. I could sit for about 10-15 minutes by day 5 after the first surgery...and they will probably let you use the walker to go out and walk a little...once they determined that I was safe to get in and out of bed and move around my room I was released to go where ever I wanted while I was on the rehab floor. I felt pretty good fairly quickly after the first surrgery...the second surgery had a much slower bounce back for me.Of course they torture you by removing your catheter as soon as they can ..and then you have to get up and move!Glad your trip went okay...and glad you are gettting the same nice weather we are! Take care, Cam

[Guest guest]

Bonnie and ,

I meant to mention the same thing...I had the same bed the whole time

I was at NEBH... or, I am almost positive it was the same bed after I

came out of the second surgery. I suspect that this is partly to

minimize exposure to new germs....anyone know for sure?

Cam

[Guest guest]

Hi welcome to the group. Terrydarker_goddess <darker_goddess@...> wrote: Hi I just joined this site and wanted to pop in to say hey. My name is stephanie, I am 20 I was dxed with HepC when I was sixteen. I am end stage chirrossis and end stage of the disease it self. I am hoping to make some friends who understand what having hep is like.

Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

Hello Terry thanks for writing to me. Its good to have

people to talk to.

--- Terry Long <pawpawto3@...> wrote:

> Hi welcome to the group. Terry

>

> darker_goddess <darker_goddess@...> wrote: Hi

> I just joined this site and wanted to pop in to say

> hey. My name is

> stephanie, I am 20 I was dxed with HepC when I was

> sixteen. I am end

> stage chirrossis and end stage of the disease it

> self. I am hoping to

> make some friends who understand what having hep is

> like.

>

>

>

>

>

>

[Guest guest]

Hi ,

Welcome to support for HCV. It's a good thing to have with this disease. It

must be scary in your shoes? I know its scary in my shoes and I'm a little

old granny.

Talk to us, tell us your hopes and dreams, your fears and worries, your

daily trials. I'll do my best to respond. You aren't alone.

Sally

Re: [ ] Hello

Hello Terry thanks for writing to me. Its good to have

people to talk to.

--- Terry Long <pawpawto3@...> wrote:

> Hi welcome to the group. Terry

>

> darker_goddess <darker_goddess@...> wrote: Hi

> I just joined this site and wanted to pop in to say

> hey. My name is

> stephanie, I am 20 I was dxed with HepC when I was

> sixteen. I am end

> stage chirrossis and end stage of the disease it

> self. I am hoping to

> make some friends who understand what having hep is

> like.

>

>

>

>

>

>

[Guest guest]

HI ..I hope you like this group and that we are some help to you..Welcome..Feel free to ask anything you like and to vent if you want to and even spread some good news..Stay in touch..darker_goddess <darker_goddess@...> wrote: Hi I just joined this site and wanted to pop in to say hey. My name is stephanie, I am 20 I was dxed with HepC when I was sixteen. I am end stage chirrossis and end stage of the disease it self. I am hoping to make some friends who understand what having hep is like.Jan

Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

Sorry to hear your so sick. Welcome to the group.

Sharon

--- Terry Long <pawpawto3@...> wrote:

> Hi welcome to the group. Terry

>

> darker_goddess <darker_goddess@...> wrote: Hi

> I just joined this site and wanted to pop in to say

> hey. My name is

> stephanie, I am 20 I was dxed with HepC when I was

> sixteen. I am end

> stage chirrossis and end stage of the disease it

> self. I am hoping to

> make some friends who understand what having hep is

> like.

>

>

>

>

>

>