question

[Guest guest]

>

>

> > Over the past 2 weeks, I have started having pain and achiness over

>my

> > entire body. It hurts just to touch my skin. All of my joints are

>hurting. I

> > also have a sore throat and it feels like I am catching the flu,

>although I

You need to see a Doctor ASAP I agree if you've been in the woods it could

be from a Deer Tick Bite, or West Nile Virus. Either one will give you

those symptoms and needs to be treated ASAP. Dave

[Guest guest]

The first thought that came into my mind was west nile virus, but I havn't been bitten by a mosquito and I am not running a fever. I havn't been in the woods either and havn't been bitten by a tick. I will see my dr. on Friday. Hopefully it will be nothing serious. -- Re: Re: Question > > > > Over the past 2 weeks, I have started having pain and achiness over >my > > entire body. It hurts just to touch my skin. All of my joints are >hurting. I > > also have a sore throat and it feels like I am catching the flu, >although I You need to see a Doctor ASAP I agree if you've been in the woods it could be from a Deer Tick Bite, or West Nile Virus. Either one will give you those symptoms and needs to be treated ASAP. Dave

[Guest guest]

Hi Dick,

Caps connected in paralell incresase the uf . so if you have two caps that are

10 uf connected it paralel they make an effective 20 uf

Take care,

V

> Bob,

> When we were building Beck units we sometimes coupled resisters and caps in

> groups to double or half the output. If I wanted to increase the uF of caps

> would I connect them in series or parallel?

> Dick

--

[Guest guest]

,

I was dx with AIH in April 2005 and immediately my doctors put me on

Prednizone 20MB (1daily); UrsoForte 500 MG (2 daily): and Azasan 75 MG (1 daiy).

My liver counts began dropping and the latter part of May my dosage of Pred was

dropped to 15 MG for a week; then 10 MG then 5 MG. Then I was taken off the

UrsoForte but continued with the Pred 2.5 MG. I stopped taking the Pred on June

25 and since then I have been on Azasan 75 MG and my blood tests have been good.

(Previous to all of this I had working on getting my thyroid problem

stabilized.) So I started treatment before having a biopsy. In fact, I have

NOT had a biopsy as yet. I will be seeing my GI in February and we will be

discussing a biopsy then. She said she wanted to get my liver counts " balanced "

before doing a biopsy.

Don't know if this helps any, but I wanted to answer your question re:

" treatment before biopsy. "

Ellie

moosescoutldr <moosescout@...> wrote: For the past 2 years, after

finding I had an elevated ALT after

donating blood, I have been to several types of doctors, had many

many tests, including 2 liver biopsies, and the only thing still

known is I have a positive ANA (with a homougounes pattern-spelled

wrong), elevated alt and ast. Everything else has been negative. In

that time the alt (and usually the ast stays close) has gone from 90

to near normal (below 50 for my lab), to a little over 100, to

normal after my gallbladder removal in March, to my current 160 (all

time high- previous was 145 in september). My regular DR, who I saw

a couple weeks ago, wondered out loud about when my liver Dr was

going to start treatment. My liver dr who I saw today said the

biopsy is the gold standard for treatment, and is sending me for

more bloodwork in 3 weeks, seeing him again in 6 and then another

biopsy. yet, before I left the office he decided to put me on 20mg a

day of prednisone. Has anyone else ever begun treatment before

anything was found on a biopsy? I'm concerned if he does, because of

not actually being diagnosed, and I'm concerned if he doesn't

because of my enzymes going up. I'm also not looking forward to the

biopsy after the first one was not like people described to me (the

second was during gallbladder surgery)

S

[Guest guest]

Thanks! I was going to wait till after the holidays to start it, but

will start today. What were your labs at when you started? My liver

doc didn't really even seem to want to start treatment until after

he got a bad biopsy. He said no doctor would start treatment before

that, it's the gold standard for treatment. He didn't give me the

prescription until I mentioned that my family doc asked when he

would start treatment. My family doc thought it would start before

now. I am looking into a second opinion and possible change of Liver

doc after the holidays. I looked into who else around here does that

and if my insurance took them and will call my family doc for a

referral and copies of my records (he received a copy of everything

from everyone) and will call the insurance company about what I have

to do for the second opinion. I hope I like this other guy more. I

haven't been too impressed with my current liver doc.

For the past 2 years,

after finding I had an elevated ALT after

> donating blood, I have been to several types of doctors, had many

> many tests, including 2 liver biopsies, and the only thing still

> known is I have a positive ANA (with a homougounes pattern-spelled

> wrong), elevated alt and ast. Everything else has been negative.

In

> that time the alt (and usually the ast stays close) has gone from

90

> to near normal (below 50 for my lab), to a little over 100, to

> normal after my gallbladder removal in March, to my current 160

(all

> time high- previous was 145 in september). My regular DR, who I

saw

> a couple weeks ago, wondered out loud about when my liver Dr was

> going to start treatment. My liver dr who I saw today said the

> biopsy is the gold standard for treatment, and is sending me for

> more bloodwork in 3 weeks, seeing him again in 6 and then another

> biopsy. yet, before I left the office he decided to put me on 20mg

a

> day of prednisone. Has anyone else ever begun treatment before

> anything was found on a biopsy? I'm concerned if he does, because

of

> not actually being diagnosed, and I'm concerned if he doesn't

> because of my enzymes going up. I'm also not looking forward to

the

> biopsy after the first one was not like people described to me

(the

> second was during gallbladder surgery)

>

>

> S

>

>

>

>

>

>

[Guest guest]

, In April 2005 my Alkaline Phosphatase was 199, AST 280, and ALT 297.

They were elevated in February and begin to rise continuously. My thyroid

doctor was quite concerned and suggested I be checked by a Gastroenterologist.

I had an additional blood test before see the GI and I believe they had elevated

a bit more, so I am not positive what the exact count was. I was totally

shocked to be dx with AIH. As I said the doctors put me on meds immediately. I

do feel I am getting good care because my counts came down so quickly. I have

two doctors that confer with each other. One has been a GI for a long time the

other for approximately 5 years. I do feel I am getting the benefit of

“experience” coupled with the most “modern” information. I do hope so anyway.

If you are uncomfortable with your treatment than I do not feel a second

opinion is a bad idea. I do know different doctors have different styles of

treatment. I have learned a great deal from the people on this site. I have

also done a bit of research and have found that the method of treatment I have

been receiving is one of the most “standard” treatments, which makes me feel

better about it all.

Well, good luck. Please keep me posted as to your progress.

Here’s wishing everyone a wonderful Holiday and my prayers are for Good Health

to all.

Ellie

moosescoutldr <moosescout@...> wrote: Thanks! I was going to wait till

after the holidays to start it, but

will start today. What were your labs at when you started? My liver

doc didn't really even seem to want to start treatment until after

he got a bad biopsy. He said no doctor would start treatment before

that, it's the gold standard for treatment. He didn't give me the

prescription until I mentioned that my family doc asked when he

would start treatment. My family doc thought it would start before

now. I am looking into a second opinion and possible change of Liver

doc after the holidays. I looked into who else around here does that

and if my insurance took them and will call my family doc for a

referral and copies of my records (he received a copy of everything

from everyone) and will call the insurance company about what I have

to do for the second opinion. I hope I like this other guy more. I

haven't been too impressed with my current liver doc.

For the past 2 years,

after finding I had an elevated ALT after

> donating blood, I have been to several types of doctors, had many

> many tests, including 2 liver biopsies, and the only thing still

> known is I have a positive ANA (with a homougounes pattern-spelled

> wrong), elevated alt and ast. Everything else has been negative.

In

> that time the alt (and usually the ast stays close) has gone from

90

> to near normal (below 50 for my lab), to a little over 100, to

> normal after my gallbladder removal in March, to my current 160

(all

> time high- previous was 145 in september). My regular DR, who I

saw

> a couple weeks ago, wondered out loud about when my liver Dr was

> going to start treatment. My liver dr who I saw today said the

> biopsy is the gold standard for treatment, and is sending me for

> more bloodwork in 3 weeks, seeing him again in 6 and then another

> biopsy. yet, before I left the office he decided to put me on 20mg

a

> day of prednisone. Has anyone else ever begun treatment before

> anything was found on a biopsy? I'm concerned if he does, because

of

> not actually being diagnosed, and I'm concerned if he doesn't

> because of my enzymes going up. I'm also not looking forward to

the

> biopsy after the first one was not like people described to me

(the

> second was during gallbladder surgery)

>

>

> S

>

>

>

>

>

>

[Guest guest]

Hello my name is I am a 26 year old mom and found out that i had

Chronic Autoimmune hep about 5 years ago after giving blood at the red cross

sience then i have been on many meds and seen many doctors my levels where

1400 have gone down to 200 and I thought that i was doing ok then had a

liver byopsy and found out that i now how cirosis and that i will start

going to the lahey clinic in a nut shell and would love to talk to someone

who may have the same thing i live in maine and am hopeing to talk to

someone that might understand non of my doc do they say that i am young to

have this is that true and is it something that if not teated you will die i

am having real trouble with the meds thsy make me sick and i am in the hosp

at least once amonth with the same symptoms you would have if you where to

have a heart attack only i am not i am just having some nasty chest pain at

leat once a month if not more i am confussed and have questions that i do

not think a doc could even answer no one around here knows a whole lot about

it so they are only reading in books that does not help the emotions part

thank you heather

Re: [ ] Re: question

, In April 2005 my Alkaline Phosphatase was 199, AST 280, and ALT

297. They were elevated in February and begin to rise continuously. My

thyroid doctor was quite concerned and suggested I be checked by a

Gastroenterologist. I had an additional blood test before see the GI and I

believe they had elevated a bit more, so I am not positive what the exact

count was. I was totally shocked to be dx with AIH. As I said the doctors

put me on meds immediately. I do feel I am getting good care because my

counts came down so quickly. I have two doctors that confer with each

other. One has been a GI for a long time the other for approximately 5

years. I do feel I am getting the benefit of " experience " coupled with the

most " modern " information. I do hope so anyway.

If you are uncomfortable with your treatment than I do not feel a second

opinion is a bad idea. I do know different doctors have different styles of

treatment. I have learned a great deal from the people on this site. I

have also done a bit of research and have found that the method of treatment

I have been receiving is one of the most " standard " treatments, which makes

me feel better about it all.

Well, good luck. Please keep me posted as to your progress.

Here's wishing everyone a wonderful Holiday and my prayers are for Good

Health to all.

Ellie

moosescoutldr <moosescout@...> wrote: Thanks! I was going to wait

till after the holidays to start it, but

will start today. What were your labs at when you started? My liver

doc didn't really even seem to want to start treatment until after

he got a bad biopsy. He said no doctor would start treatment before

that, it's the gold standard for treatment. He didn't give me the

prescription until I mentioned that my family doc asked when he

would start treatment. My family doc thought it would start before

now. I am looking into a second opinion and possible change of Liver

doc after the holidays. I looked into who else around here does that

and if my insurance took them and will call my family doc for a

referral and copies of my records (he received a copy of everything

from everyone) and will call the insurance company about what I have

to do for the second opinion. I hope I like this other guy more. I

haven't been too impressed with my current liver doc.

For the past 2 years,

after finding I had an elevated ALT after

> donating blood, I have been to several types of doctors, had many

> many tests, including 2 liver biopsies, and the only thing still

> known is I have a positive ANA (with a homougounes pattern-spelled

> wrong), elevated alt and ast. Everything else has been negative.

In

> that time the alt (and usually the ast stays close) has gone from

90

> to near normal (below 50 for my lab), to a little over 100, to

> normal after my gallbladder removal in March, to my current 160

(all

> time high- previous was 145 in september). My regular DR, who I

saw

> a couple weeks ago, wondered out loud about when my liver Dr was

> going to start treatment. My liver dr who I saw today said the

> biopsy is the gold standard for treatment, and is sending me for

> more bloodwork in 3 weeks, seeing him again in 6 and then another

> biopsy. yet, before I left the office he decided to put me on 20mg

a

> day of prednisone. Has anyone else ever begun treatment before

> anything was found on a biopsy? I'm concerned if he does, because

of

> not actually being diagnosed, and I'm concerned if he doesn't

> because of my enzymes going up. I'm also not looking forward to

the

> biopsy after the first one was not like people described to me

(the

> second was during gallbladder surgery)

>

>

> S

>

>

>

>

>

>

[Guest guest]

Hi ,

I was originally dx with autoimmune hep in Aug but went to Lahey and they

changed the dx to pbc. I have done a lot of research about both of these

diseases and have learned the following: they are both autoimmune, both are

treatable (not curable) with meds. With autoimmune hep you will likely cycle

on

and off prednisone for the rest of your life-though some can get off and stay

off- that is rare. There are many on this site that know more about

autoimmune than I, but I can tell you that the meds are life savers despite the

negative side effects. Autoimmune hep is caused when your body's immune system

recognizes your liver cells as foreign and attacks them. They can tell this by

the increased lymphocytes etc. As for Lahey I can't say enough about them.

They know their stuff and you will be in good hands. I have Dr. Goldberg,

who is surprizingly young but very upbeat and knowledgable. I'm sure that no

matter what hepatologist you see there they will be thorough and check all of

the other issues that go along with autoimmune. Please feel free to email me

if you would like. I wish you the best-Dianne, MA, dx PBC 09/05 stage 3

[Guest guest]

I agree with about Dr. Goldberg and the Lahey - he is also

my doctor, though I've had normal LFT's long enough that he says I

no longer need to see him unless there's a problem. My PCP does the

follow up with bloodwork done every three months.

Regarding the chest pain - it could be costochondritis which is

associated with autoimmune liver disease and can be quite painful.

It is an inflammation of the cartilage in the chest area. I've had

it since 2001, and it is actually how I was finally diagnosed with

AIH/PBC. I cannot take anti-inflammatories so I have to live with

it. Warm moist heat helps, and if it's really bad I go to physical

therapy where they use a small ultrasound wand to " push "

corticosteroidal cream into the area and that does help.

You are in excellent hands with the Lahey doctors. Dr. Goldberg

explains everything in a way you can understand. He also listens

and takes the time to answer all your questions.

Take care,

Sandy C.

[Guest guest]

welcome to our group. I don't know if I can answer any of your

questions but I am sure someone can.

You say you have chronic hepitits right? And now you have cirrhosis?

What meds are you on? Some of them can cause the problems you are

experiencing so it would help if we knew what you are taking.

I believe we have a member or two in your area so maybe they will write in or

maybe they have I am a little behind.

In my opinion ( I am not doc so always defer to a doc} I don't think you are

too young for cirrhosis. Of course most of us have AIH and cirrhosis so we

are used to it. For an average person you are young but for someone with liver

problems it's not so unusual.

The liver can heal it self but there are meds to take and other ways to help

your liver.

I am going to quit now and you can ask me anything.

Welcome

the WV hillbilly

[Guest guest]

no heather you are not too young my daughter is 13 in 2 days and she was

diagnosed 2 years ago, she hs severe cirrosis and some day will need a liver

transplant, its best to take prednisone/imuran combination thats what has

saved my daughter and she has gone from almost going on the transplant list

to being stable for almost 20 monthes now so she can forgo the transplant as

long as possible, the cirrosis can't be reversed but it can be maintained,

you must find a gastroenterolgist or hepologist, they are the experts on

this, good luck Ruth Cartwright

>From: " mem mackay " <memel@...>

>Reply-

>< >

>Subject: Re: [ ] Re: question

>Date: Mon, 26 Dec 2005 20:28:44 -0500

>

>Hello my name is I am a 26 year old mom and found out that i had

>Chronic Autoimmune hep about 5 years ago after giving blood at the red

>cross

>sience then i have been on many meds and seen many doctors my levels where

>1400 have gone down to 200 and I thought that i was doing ok then had a

>liver byopsy and found out that i now how cirosis and that i will start

>going to the lahey clinic in a nut shell and would love to talk to someone

>who may have the same thing i live in maine and am hopeing to talk to

>someone that might understand non of my doc do they say that i am young to

>have this is that true and is it something that if not teated you will die

>i

>am having real trouble with the meds thsy make me sick and i am in the hosp

>at least once amonth with the same symptoms you would have if you where to

>have a heart attack only i am not i am just having some nasty chest pain at

>leat once a month if not more i am confussed and have questions that i do

>not think a doc could even answer no one around here knows a whole lot

>about

>it so they are only reading in books that does not help the emotions part

>thank you heather

> Re: [ ] Re: question

>

>

> , In April 2005 my Alkaline Phosphatase was 199, AST 280, and ALT

>297. They were elevated in February and begin to rise continuously. My

>thyroid doctor was quite concerned and suggested I be checked by a

>Gastroenterologist. I had an additional blood test before see the GI and I

>believe they had elevated a bit more, so I am not positive what the exact

>count was. I was totally shocked to be dx with AIH. As I said the doctors

>put me on meds immediately. I do feel I am getting good care because my

>counts came down so quickly. I have two doctors that confer with each

>other. One has been a GI for a long time the other for approximately 5

>years. I do feel I am getting the benefit of " experience " coupled with the

>most " modern " information. I do hope so anyway.

>

> If you are uncomfortable with your treatment than I do not feel a second

>opinion is a bad idea. I do know different doctors have different styles

>of

>treatment. I have learned a great deal from the people on this site. I

>have also done a bit of research and have found that the method of

>treatment

>I have been receiving is one of the most " standard " treatments, which makes

>me feel better about it all.

>

> Well, good luck. Please keep me posted as to your progress.

>

> Here's wishing everyone a wonderful Holiday and my prayers are for Good

>Health to all.

>

> Ellie

>

>

>moosescoutldr <moosescout@...> wrote: Thanks! I was going to wait

>till after the holidays to start it, but

>will start today. What were your labs at when you started? My liver

>doc didn't really even seem to want to start treatment until after

>he got a bad biopsy. He said no doctor would start treatment before

>that, it's the gold standard for treatment. He didn't give me the

>prescription until I mentioned that my family doc asked when he

>would start treatment. My family doc thought it would start before

>now. I am looking into a second opinion and possible change of Liver

>doc after the holidays. I looked into who else around here does that

>and if my insurance took them and will call my family doc for a

>referral and copies of my records (he received a copy of everything

>from everyone) and will call the insurance company about what I have

>to do for the second opinion. I hope I like this other guy more. I

>haven't been too impressed with my current liver doc.

>

> For the past 2 years,

>after finding I had an elevated ALT after

> > donating blood, I have been to several types of doctors, had many

> > many tests, including 2 liver biopsies, and the only thing still

> > known is I have a positive ANA (with a homougounes pattern-spelled

> > wrong), elevated alt and ast. Everything else has been negative.

>In

> > that time the alt (and usually the ast stays close) has gone from

>90

> > to near normal (below 50 for my lab), to a little over 100, to

> > normal after my gallbladder removal in March, to my current 160

>(all

> > time high- previous was 145 in september). My regular DR, who I

>saw

> > a couple weeks ago, wondered out loud about when my liver Dr was

> > going to start treatment. My liver dr who I saw today said the

> > biopsy is the gold standard for treatment, and is sending me for

> > more bloodwork in 3 weeks, seeing him again in 6 and then another

> > biopsy. yet, before I left the office he decided to put me on 20mg

>a

> > day of prednisone. Has anyone else ever begun treatment before

> > anything was found on a biopsy? I'm concerned if he does, because

>of

> > not actually being diagnosed, and I'm concerned if he doesn't

> > because of my enzymes going up. I'm also not looking forward to

>the

> > biopsy after the first one was not like people described to me

>(the

> > second was during gallbladder surgery)

> >

> >

> > S

> >

> >

> >

> >

> >

> >

[Guest guest]

How quickly did your symptoms go from nagging to chronic? I'm just curious about what others have experienced.

I had low back pain for almost a year before I did anything about it. I had just assumed it was from heavy lifting that I had been doing.

I keep wondering how much worse this will get.

Over that year, the pain not only increased but it progressively got to where I couldn't straighten up.

And I'm wondering if Flatback symptoms show up overnight or do they progress slowly or what?

Symptoms differ in everyone, but I don't think they happen that quickly.

Are you seeing anyone for the hip pain yet Jill?

~~

[Guest guest]

Jill,

My first and only indication that anything was wrong was what I

thought was hip...and a few months later tingling in my foot. At the

time I didn't know anything about flatback, so when my local ortho

suggested PT, I signed up. I had been put on the NSAID of the day,

Vioxx...and in retrospect believe that working the whole low

back/hip area in PT may have aggravated or hastened the

inevitible...but I will never know.

All that is to say, I think you are lucky, and somewhat ahead of the

game. You are able to educate yourself...question carefully any

course of action recommended to you by a doctor or therapist. You

will probably save money skipping over the chiropracter step.

I don't think it is hopeless by any means...but pain is your body's

way of telling you something ain't right. If you suspect this

nagging pain is related to you fusion...then my thought would be to

start working on finding a doctor you have compete confidence in

that understands your problem. Since you have been reading along

here you probably know that most of us have visted several doctors

at some distance from our homes in order to find that " peace of

mind " that comes from speaking to a doctor that has a handle on what

is going on with us. And I can assure you that not one of them

is " looking for work " . Consuslting a specialist is not going to get

you in the surgical suite the next day. It will get you into the

hands of someone who can hopefully offer ways to think about where

they think you are in the progression of this calamity, and how you

can proceed.

My own timeline went like this:

October 03- hip pain. Consulted local ortho. A lot of mumbo

jumbo,put on vioxx and p.t.. (after 48 hours on vioxx I realized how

painful my low back had become/because it was gone).

Jan 04 - tingling in foot...acute pain deep in buttock area. More

inconclusive chat from local ortho...told me I had to " live with

it " ..not to mess with my old HR stuff.

Feb 04 - Still skiing but also stumbled upon article on flatback

(elizabeth mina) while undertaking my own internet search or

scoliois/HR. Chills as I realized the description was exactly " me " .

Learned all I could via internet...set up appt with

closest " expert " /Rand in Boston.

April 04 - Met with Dr Rand. Evaluation confirmed flatback. As the

onset of sypmtoms had been recent and I expressed a desire to put of

any surgical intervention or narcotics due to my own career field

(and retirement timeline) he offered epidurals as a potential short

term relief and said to see him in about a year. Recommended I

continue to educate myself about the condition and the surgery. Put

me in touch with some of his patients.

Summer 04 - None of the NSAIDS were working, I could not walk or sit

and getting through a shift standing and them driving home usually

had me in a white knuckle cold sweat. I scheduled the epidural for

late august. Hoping the procedure would give enough relief to travel

I also set up a second opinion in NYC during the 6-8 weeks I

anticipated being able to walk.

September 04 - Dr Boachie confirmed flatback and same trajectory of

symptoms to expect. Offered similar solutions..confirmed in my mind

my eventual progression.

October 04- Epidural lasted about 8 weeks...pain decreased from 10

to 6/7 and by mid month was back with a vengence. Scheduled a second

epidural for Nov hoping to get through the holidays. Scheduled a

follow up visit with Rand for December.

Nov/Dec 04 - Epidural minimally helpful...pain from 10/11 to 8/9.

Recognize I can't live like this or let my family live like this.

Also not able to work effectivly....realize I will not be able to

hold off surgery to retirement.

Dec 04 - At appoinment with Rand reviewed all the options again.

Asked more in depth questions about his approach and then scheduled

surgery. I worked for and got a date in Feb 05....really just a year

from the onset of symptoms that prompted me to seek a specialist.

Feb 05- Two day revision surgery with Rand at NEBH. Nerve pain

relieved by the first stage which includes a decompression

componenet.

Jan 06 - Doing well...no real pain (at least related to the surgery)

except what I am owing to turning 50. In any event I am not taking

anything and have resumed a fairly active life.

I guess that is a long way of saying, once I felt that I hit the

chronic stage....(april-july 04)...I started working toward surgery

which took place 7-9 months later.

Still,I am sure it is a very indivdual path each of us take.

I hope my long answer helped! Cam

[Guest guest]

Cam – this timeline is wonderful. You should put it in the “files”

section or “member stories”.

Lorrie

From: [mailto: ] On Behalf Of cammaltby

Sent: Saturday, January 21, 2006

9:06 AM

Subject: [ ] Re:

question

Jill,

My first and only indication that anything was

wrong was what I

thought was hip...and a few months later tingling

in my foot. At the

time I didn't know anything about flatback, so

when my local ortho

suggested PT, I signed up. I had been put on the

NSAID of the day,

Vioxx...and in retrospect believe that working the

whole low

back/hip area in PT may have aggravated or

hastened the

inevitible...but I will never know.

All that is to say, I think you are lucky, and

somewhat ahead of the

game. You are able to educate yourself...question

carefully any

course of action recommended to you by a doctor or

therapist. You

will probably save money skipping over the

chiropracter step.

I don't think it is hopeless by any means...but

pain is your body's

way of telling you something ain't right. If you

suspect this

nagging pain is related to you fusion...then my

thought would be to

start working on finding a doctor you have compete

confidence in

that understands your problem. Since you have been

reading along

here you probably know that most of us have visted

several doctors

at some distance from our homes in order to find

that " peace of

mind " that comes from speaking to a doctor

that has a handle on what

is going on with us. And I can assure you that not

one of them

is " looking for work " . Consuslting a

specialist is not going to get

you in the surgical suite the next day. It will

get you into the

hands of someone who can hopefully offer ways to

think about where

they think you are in the progression of this

calamity, and how you

can proceed.

My own timeline went like this:

October 03- hip pain. Consulted local ortho. A lot

of mumbo

jumbo,put on vioxx and p.t.. (after 48 hours on

vioxx I realized how

painful my low back had become/because it was

gone).

Jan 04 - tingling in foot...acute pain deep in

buttock area. More

inconclusive chat from local ortho...told me I had

to " live with

it " ..not to mess with my old HR stuff.

Feb 04 - Still skiing but also stumbled upon

article on flatback

(elizabeth

mina) while undertaking my own internet search or

scoliois/HR. Chills as I realized the description

was exactly " me " .

Learned all I could via internet...set up appt

with

closest " expert " /Rand in Boston.

April 04 - Met with Dr Rand. Evaluation confirmed

flatback. As the

onset of sypmtoms had been recent and I expressed

a desire to put of

any surgical intervention or narcotics due to my

own career field

(and retirement timeline) he offered epidurals as

a potential short

term relief and said to see him in about a year.

Recommended I

continue to educate myself about the condition and

the surgery. Put

me in touch with some of his patients.

Summer 04 - None of the NSAIDS were working, I

could not walk or sit

and getting through a shift standing and them

driving home usually

had me in a white knuckle cold sweat. I scheduled

the epidural for

late august. Hoping the procedure would give

enough relief to travel

I also set up a second opinion in NYC during the

6-8 weeks I

anticipated being able to walk.

September 04 - Dr Boachie confirmed flatback and

same trajectory of

symptoms to expect. Offered similar

solutions..confirmed in my mind

my eventual progression.

October 04- Epidural lasted about 8 weeks...pain

decreased from 10

to 6/7 and by mid month was back with a vengence.

Scheduled a second

epidural for Nov hoping to get through the

holidays. Scheduled a

follow up visit with Rand

for December.

Nov/Dec 04 - Epidural minimally helpful...pain

from 10/11 to 8/9.

Recognize I can't live like this or let my family

live like this.

Also not able to work effectivly....realize I will

not be able to

hold off surgery to retirement.

Dec 04 - At appoinment with Rand

reviewed all the options again.

Asked more in depth questions about his approach

and then scheduled

surgery. I worked for and got a date in Feb

05....really just a year

from the onset of symptoms that prompted me to

seek a specialist.

Feb 05- Two day revision surgery with Rand at NEBH. Nerve pain

relieved by the first stage which includes a

decompression

componenet.

Jan 06 - Doing well...no real pain (at least

related to the surgery)

except what I am owing to turning 50. In any event

I am not taking

anything and have resumed a fairly active life.

I guess that is a long way of saying, once I felt

that I hit the

chronic stage....(april-july 04)...I started

working toward surgery

which took place 7-9 months later.

Still,I am sure it is a very indivdual path each

of us take.

I hope my long answer helped! Cam

[Guest guest]

Thanks, Cam and , for your responses. You answered my question. I am

scheduled to

see a specialist in Miami next month. In the mean time, I am trying whatever

prescription

pain relievers I can think of AND DH's painkillers from minor surgery. I know

I'm not

supposed to, but they do take the edge off at the end of the day. Once they're

gone, that's it.

Anything else you can think of to relieve pain? I'm trying yoga too.

Jill

[Guest guest]

Dear Jill,

I knew that something was wrong back in 1984, after the birth of my first

child, some 11 years after the Harrington Rod. I had shooting pain down my

leg into my foot. I went for years with that, saw several doc's, who kept

saying my fusions looked great, and with all I had done I should expect some

pain. Looking back on things, hindsight is amazing, I was very limited on

what I could do. I didn't walk more than a block, I had a leaning forward

stance, as my best friend said " you always looked like you were protecting

yourself " . I managed my life, just when the pain got bad, I sat down till it

resolved itself, then I was back at it. It just got to the point that I had

to sit down very frequently, like four or five times while making dinner.

What sent me back to doc's was helping a neighbor move, I had unbelieveable

hip and butt pain, so I thought I'd give doc's one more shot, and since we

were in a new city, I'd try, or else my husband threatened to get me a

wheelchair. I had been to twenty some doc's through the years, and most

pooh-poohed me off, one idiot even told me it was in my head.

In october of 2000 I was refered to Dr. Anant Kumar in Denver. Got my

Flatback diagnosis, and along with that a caring understanding of what was

wrong with me and a plan to fix it. Since I was only forty he wanted to do a

decompression/lami so I could retain my ability to bend, and we could go

back in later and fuse me to the sacrum if necessary.

He later called me at home and asked me to see Dr. O'Brien, they

worked together on long cases. He concured with Kumar's plan of action.

December of 2000, I had the Lami/ Decompression. I had wonderful relief from

the hip/butt pain. Now I had pain in the low back, I guess I didn't notice

it until the hip pain was gone. We did a year of Celebrex, spinal

injections, massage therapy etc. Then we were onto plan " B " fusion to the

sacrum.

January 2002, I had fusion to the sacrum, rods, cages, screws and bolts.

Front and back approach, twelve hours total. I recovered extreamly well, was

hiking with my kids in may, something I had never been able to do with them.

June 2002, went to see Kumar for my six month check-up, he hung my x-rays,

and he turned white, hard to do since he's a little Indian guy, and started

measuring. I knew I was sunk. My fusion mass from the Harrington Rod

surgery above where Kumar and O'Brien had worked, had cracked above L-3, and

I was falling to the right. So we were onto plan " C " , to crank me up, fuse

the top part of my spine t-1to T-5, straighten up my curves, put in new

hardware, stainless steel, harder and stronger, cause my scoliosis wants to

go hard to the right.

December 2002- I had the " Big " surgery, all the work listed above. The

third time was a charm for me. I walk whereever I want with no pain. I can

stand in line, cook dinner, even go to the DMV. While pain relief is what I

was looking for, and what I got, I'm also pleased at how much better I look.

I'm even , straight, taller by 2 and 1/2 inches, and the humps on my back

are reduced to where I can wear tighter clothes and no one notices. I feel

like these two doc's gave me my life back, at least the ability to live it

painfree and productively. Such a gift! It was a long battle, a lot of

surgery, but all worth it in the end.

Hope this helps!

Colorado Springs

[ ] question

> How quickly did your symptoms go from nagging to chronic? I'm just

> curious about what

> others have experienced. I don't have a diagnosis yet, but I'll tell you

> that I first noticed some

> nagging hip pain about 5 months ago, which I assumed would work itself

> out. Now it's

> chronic and puts me in a grouchy mood every day. I can funtion, I'm not

> in tears...but I

> honestly can't take this anymore. I keep wondering how much worse this

> will get. And I'm

> wondering if Flatback symptoms show up overnight or do they progress

> slowly or what?

>

>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

I'm glad you're seeing someone soon Jill. This pain is so unique - I

wish we had a quick and easy answer for it. Pool therapy is

wonderful, but understandably inaccessable to most. OTC nsaids (i.e.

Motrin, Aleve) may help some. And using anothers pain pills to take

the edge off is great if it helps! Just hang in there until you see

the doctor next month, and we'll be here to back you as you start down

this long old road!

Peace -

~~

>

> Thanks, Cam and , for your responses. You answered my

question. I am scheduled to

> see a specialist in Miami next month. In the mean time, I am trying

whatever prescription

> pain relievers I can think of AND DH's painkillers from minor

surgery. I know I'm not

> supposed to, but they do take the edge off at the end of the day.

Once they're gone, that's it.

> Anything else you can think of to relieve pain? I'm trying yoga

too.

> Jill

>

[Guest guest]

I understand where you are coming from, izarahstar! I have an ostomy and, once when I was having trouble ordering the necessary equipment and the man on the other end got huffy with me, I told him that he needed an emergency urostomy! He laughed, and got back to helping me instead of judging me!

Carole

[Guest guest]

OHMYGOD!! I too have had a Dr tell me it was all in my head!!! Unreal eh? I'd like to put a Harrington Rod in his back and then tell him the pains in his head!!! Sorry, I had to butt in, but as soon as I read that, I thought immediatley back to when I was told that! Kirkaldie <.Kirkaldie@...> wrote: Dear Jill,I knew that something was wrong back in 1984, after the birth of my first child, some 11 years after the Harrington Rod. I had shooting pain down my leg into my foot. I went for years with that, saw several doc's, who kept saying my fusions looked great, and with all I had done I should expect some pain. Looking back on things, hindsight is amazing, I was very limited on what I could do. I didn't walk more than a block, I had a leaning forward stance, as my best friend said" you

always looked like you were protecting yourself". I managed my life, just when the pain got bad, I sat down till it resolved itself, then I was back at it. It just got to the point that I had to sit down very frequently, like four or five times while making dinner. What sent me back to doc's was helping a neighbor move, I had unbelieveable hip and butt pain, so I thought I'd give doc's one more shot, and since we were in a new city, I'd try, or else my husband threatened to get me a wheelchair. I had been to twenty some doc's through the years, and most pooh-poohed me off, one idiot even told me it was in my head.In october of 2000 I was refered to Dr. Anant Kumar in Denver. Got my Flatback diagnosis, and along with that a caring understanding of what was wrong with me and a plan to fix it. Since I was only forty he wanted to do a decompression/lami so I could retain my ability to bend, and we could go back in later and fuse me

to the sacrum if necessary.He later called me at home and asked me to see Dr. O'Brien, they worked together on long cases. He concured with Kumar's plan of action.December of 2000, I had the Lami/ Decompression. I had wonderful relief from the hip/butt pain. Now I had pain in the low back, I guess I didn't notice it until the hip pain was gone. We did a year of Celebrex, spinal injections, massage therapy etc. Then we were onto plan" B" fusion to the sacrum.January 2002, I had fusion to the sacrum, rods, cages, screws and bolts. Front and back approach, twelve hours total. I recovered extreamly well, was hiking with my kids in may, something I had never been able to do with them.June 2002, went to see Kumar for my six month check-up, he hung my x-rays, and he turned white, hard to do since he's a little Indian guy, and started measuring. I knew I was sunk. My fusion mass from the Harrington Rod

surgery above where Kumar and O'Brien had worked, had cracked above L-3, and I was falling to the right. So we were onto plan" C", to crank me up, fuse the top part of my spine t-1to T-5, straighten up my curves, put in new hardware, stainless steel, harder and stronger, cause my scoliosis wants to go hard to the right.December 2002- I had the " Big" surgery, all the work listed above. The third time was a charm for me. I walk whereever I want with no pain. I can stand in line, cook dinner, even go to the DMV. While pain relief is what I was looking for, and what I got, I'm also pleased at how much better I look. I'm even , straight, taller by 2 and 1/2 inches, and the humps on my back are reduced to where I can wear tighter clothes and no one notices. I feel like these two doc's gave me my life back, at least the ability to live it painfree and productively. Such a gift! It was a long battle, a lot of

surgery, but all worth it in the end.Hope this helps!Colorado Springs [ ] question> How quickly did your symptoms go from nagging to chronic? I'm just > curious about what> others have experienced. I don't have a diagnosis yet, but I'll tell you > that I first noticed some> nagging hip pain about 5 months ago, which I assumed would work itself > out. Now it's> chronic and puts me in a grouchy mood every day. I can funtion, I'm not > in tears...but I> honestly can't take this anymore. I keep wondering how much worse this > will get. And I'm> wondering if Flatback symptoms show up overnight or do they progress > slowly or

what?>>>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

[Guest guest]

Hey, Izarah, that's what we're here for! At some level I think even the docs who specialize in this sort of thing will never completely "get it". Not until someone with a scoliosis fusion becomes a scoliosis surgeon, any way.

Sharon

[ ] question> How quickly did your symptoms go from nagging to chronic? I'm just > curious about what> others have experienced. I don't have a diagnosis yet, but I'll tell you > that I first noticed some> nagging hip pain about 5 months ago, which I assumed would work itself > out. Now it's> chronic and puts me in a grouchy mood every day. I can funtion, I'm not > in tears...but I> honestly can't take this anymore. I keep wondering how much worse this > will get. And I'm> wondering if Flatback symptoms show up overnight or do they progress > slowly or what?>>>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

[Guest guest]

Jill,

I am not a doctor and can't begin to know what will work for you. I

did find that using a lumbar support soft brace very tight over my low

back helped me...by reducing motion there, I guess. It is not a good

solution otherwise because it will reduce your abdominal tone. I feel

like I am still paying for that sometimes...or maybe it is just the

way it is when you approach 50??!!!

I never tried yoga...I was fused to L-4 and knew that there was no way

I could do most of the poses under the instructors here. If I was to

do it again, and hopefully in the future I will, I would see about

pilates. But I say that cautiously...since it has become the " latest "

craze there are many people passing themselves off as instructors when

they are glorified aerobics instructors. There actually are some very

good and well trained folks out there that understand how the core

muscles actually work and how they relate to the spine...but you have

to look carefully. You could do more harm than good, so listen to your

aches and pains!

I undertook water workouts which might be easier to locate in your

area than mine...very safe and a great workout in the right hands. I

loved getting into a hot tub and doing stretching...that really took a

lot of spasm type pain away. I am determined to get one for my own

home eventually. My other favorite anti-pain weapon was ice, or

rather, gel ice packs tucked into my soft brace. That and the Celebrex

was as good as it could get since I could not take narcotics in my job

as an air traffic controller.

I am sure you know how careful you should be with narcotic pain

relief, especially if it is not prescribed for you. I hope your visit

in Miami goes well. Cam

[Guest guest]

Your symptoms are chronic when you have pain killers readily

accessible all the time and you know exactly how much longer the

current supply will last.

Its a little tongue in cheek, but true.

>

> How quickly did your symptoms go from nagging to chronic? I'm just

curious about what

> others have experienced. I don't have a diagnosis yet, but I'll

tell you that I first noticed some

> nagging hip pain about 5 months ago, which I assumed would work

itself out. Now it's

> chronic and puts me in a grouchy mood every day. I can funtion, I'm

not in tears...but I

> honestly can't take this anymore. I keep wondering how much worse

this will get. And I'm

> wondering if Flatback symptoms show up overnight or do they progress

slowly or what?

>

[Guest guest]

Good one!

Bonnie

[ ] Re: question

Your symptoms are chronic when you have pain killers readilyaccessible all the time and you know exactly how much longer thecurrent supply will last.Its a little tongue in cheek, but true.>> How quickly did your symptoms go from nagging to chronic? I'm justcurious about what > others have experienced. I don't have a diagnosis yet, but I'lltell you that I first noticed some > nagging hip pain about 5 months ago, which I assumed would workitself out. Now it's > chronic and puts me in a grouchy mood every day. I can funtion, I'mnot in tears...but I > honestly can't take this anymore. I keep wondering how much worsethis will get. And I'm > wondering if Flatback symptoms show up overnight or do they progressslowly or what?>

[Guest guest]

Hi ...I am only on celebrex and have not ever been on methotrexate

or any of the newer meds (remicade, enbrel, etc.). As you say our disease

process has been similar and the deformities are as well. As for being given the

opportunity to take these meds I have not been given the option and that is

mainly due to the fact my disease has remained inactive or only slightly

active. Had I been given the chance I am not sure what I would do ....I hear

wonder

stories and then I hear nightmare stories about complications from these

meds so if the time came to make a decision I would lay out all info and make a

very informed decision. Donna

[Guest guest]

Thanks to all of you for your answers.

I am on Medicaid, so therfore , I dont know whether either Enbrel or MTX or

both would or wouldn't be coverd.

As usual a darned if ya do darned if ya dont type of thing. Pred has

already caused me to have to have cataract surgery in both eyes as well as on

Jan 9

when my dr did my ankle surgery he found my bones are very brittle - THANKS

PREDNISONE!

I took goold for 13 yrs - until it seemed to quit working. Shots dont bother

me, but I dont know about giving them to myself.

I do KNOW, kids today are much luckier in as there are so many more options

than when I was dx. I remember being 7 yrs old and AFRAID of needles - and I

was asked to give blood to find a cure - I did NOT hesitate.

We havent given up on trying for kid #2 - so as for now both Enbrel and MTX

are not options - but I am looking to the future.

I would LOVE to be " Normal " - but thanks to arthur that is not meant to be.

I am just hoping for some miracle drug to help me live the best life with my

5 yr old daughter that can be. Celebrex/prednisone and Gluchosamine

Chondroitin (supplemet) is holding my pain level down - so I cant complain there

- I

guess I just want something better.

Again, thanks. Maybe - if finances agree- I can meet more of y'all in

atlanta.

love, prayers and blessings,

(age 36 poly since age 3)