Doc visit

[Guest guest]

In a message dated 9/14/00 11:21:09 AM Eastern Daylight Time,

jcando@... writes:

<< y husband or someone is here to take me home " and

then riding the bus home alone while still on demerol and versed. I wonder

where I could get a 24 hour baby sitter..... maybe a male escort? LOL!

>>

Tell them the truth. The hospital or clinic should have info for you on

getting the help you need. Ask questions. Wish I was close enough to help

you. Come live with me!!!!!

Hugs,

GINGER

[Guest guest]

In a message dated 9/14/00 1:17:02 PM Eastern Daylight Time,

jcando@... writes:

<<

But now that the dept knows, I guess it would be ok for me to ask about taxi

vouchers or something.

thanks, Jen >>

Yes, Ma'am,

It sounds to me like everything is changing for you and you have to be open

to finding new ares of support. I have learned the hard way that we need to

open our mouths and ask for what we need and be specific. There are so many

services out there that are avaiable , but no one offers the info, we have to

activly seek it. good luck. i know things are reallt tough for you right now.

you are in thoughts and prayers.

Love,

GINGER

[Guest guest]

I'm packing my bag right now!

On Thu, 14 Sep 2000 13:03:34 EDT, egroups wrote:

> In a message dated 9/14/00 11:21:09 AM Eastern Daylight Time,

> jcando@... writes:

>

> << y husband or someone is here to take me home " and

> then riding the bus home alone while still on demerol and versed. I

wonder

> where I could get a 24 hour baby sitter..... maybe a male escort? LOL!

> >>

> Tell them the truth. The hospital or clinic should have info for you on

> getting the help you need. Ask questions. Wish I was close enough to help

> you. Come live with me!!!!!

> Hugs,

>

> GINGER

_______________________________________________________

Say Bye to Slow Internet!

http://www.home.com/xinbox/signup.html

[Guest guest]

Ginger,

Seriously though...It was hard enough yesterday to ask the gals in the

Gastro Dept and my Gastro to no longer release any information to my

husband. He always had an open door to calling them and confirming

appointments, and talking to my doc when he needed clarity about something.

He was supportive in this area, took time off from work, took two days vs

one when he saw the potential for loading me up on too mich versed when I

was combative during the procedure (slept 18 hours that day). But in order

to set the boundries and to assure that all my ducks are in order I can no

longer allow him to be apart of my medical treatment no matter how long the

divorce takes.

But now that the dept knows, I guess it would be ok for me to ask about taxi

vouchers or something.

thanks, Jen

On Thu, 14 Sep 2000 13:03:34 EDT, egroups wrote:

> In a message dated 9/14/00 11:21:09 AM Eastern Daylight Time,

> jcando@... writes:

>

> << y husband or someone is here to take me home " and

> then riding the bus home alone while still on demerol and versed. I

wonder

> where I could get a 24 hour baby sitter..... maybe a male escort? LOL!

> >>

> Tell them the truth. The hospital or clinic should have info for you on

> getting the help you need. Ask questions. Wish I was close enough to help

> you. Come live with me!!!!!

> Hugs,

>

> GINGER

_______________________________________________________

Say Bye to Slow Internet!

http://www.home.com/xinbox/signup.html

[Guest guest]

Jen,

I've heard of a shunt or maybe it was a stent? I don't really know the

difference, but I thought that this was what they do for bile duct

obstruction. I don't have varices though I'm told that this is one of my

potential risks. So far I've been lucky to avoid having any complications

though I can see that there's increased pressure on my veins - all of them.

Is it that way for you too? The veins in my hands stand out and I've

developed terrible varicose veins in one leg. I even have dark, distended

veins on my breasts.

Imuran causes acne? I thought Prednisone was the cause. Actually, the only

time I've had skin eruptions was when my bile ducts were obstructed. Then I

imagined that my body was full of " poison " and it was showing up by way of

little zits. Not a very clinical explanation, I know. I didn't have a

major problem, though. Just a few on my face and even on my torso.

I wonder if I'm doing harm or good by using an exercise bicycle? I don't

use ours regularly, but occasionally I do just to see if I feel stronger or

weaker in the legs afterwards. Surprisingly, it doesn't bother my legs at

all to use the bike and it does stimulate my respiratory system. I think

that's good. Hope so, anyhow.

I guess the doctors at Cedars-Sinai don't use the same staging system your

doctor uses. Mine uses stages 1 to 3, as I recall, with 3 the least likely

to need a transplant, but sick enough to be listed. I believe that's the

same scale that UNOS uses. The Cedars doctor I saw in June told me to

expect to get more fatigued more often over the next couple of years, but

also to expect good days in between. So far, I don't feel any worse than I

did when I saw him in June, so maybe he meant 20 years. He did make note

that I'm high risk to " decompensate " and I just read that " decompensate "

means to develop bleeding varices, among other problems. They really don't

know what's going to happen to any of us. Half the time, the best they can

do is offer educated guesses.

The transplant center at Cedars-Sinai in LA is excellent. They have a

website so you can check them out if you're interested. It's small and you

don't feel too lost in the system, but it's also very busy with all kinds of

people milling around behind the front desk. I believe that they have an

superior team, and I have the impression that no facility necessarily

maintains the same standards of excellence year in and year out, except

maybe someplace like the Mayo Clinic. They also have the sobriety rule, and

they enforce it. They wanted to do an alcohol and drug check on me but I

have days when my bladder decides to be reluctant and I couldn't give them

a sample. They told me that it didn't matter since they didn't consider me

in the alcohol and drug risk category. I wondered if I look so old and

boring and lacking fun in life that they couldn't imagine me doing something

like having a few drinks now and then.

Cedars didn't put the emphasis on family support that Scripps did when I was

evaluated there. If things reached the point where you had to be listed,

I'm sure you could enlist a friend to stand in for you? They want to be

sure that you have the will to survive, of course. But, they also want to

be sure that you'll have someone to watch over you during the period when

you're recuperating. That would be rough for your son to handle. My nephew

tried to take care of my Mom during the months before she died and it was

not right for someone his age to have that kind of responsibility. He was

14 at the time.

Your insurance company just might pay for cab-ambulance transport home from

out-patient surgery. They do for my son when he has to have those kinds of

things done. He doesn't have anyone to take him home either. Usually a

hospital insists on having someone escort you to the vehicle that is taking

you home, so it would be hard to make a getaway without being caught. Where

do you live? If you lived here, I'd babysit but I wouldn't be as much fun

as a male escort. I " babysat " for my next door neighbor after she had day

surgery. Her uncle brought her to our front door with no forewarning, and

she was so groggy she could hardly walk. I sat her down in a recliner,

wrapped a blanket around her, brought her a cup of tea, and she promptly

went to sleep for the next four hours. We all need to be watched over and

pampered a little once in awhile. Especially when we don't feel well.

Things will look up, Jen. I've always tried to maintain the philosophy that

no matter how bleak things might seem, tomorrow has a way of taking care of

itself. Sounds to me like you need to start re-establishing some family

relationships, though. The good thing about broken fences is that they can

almost always be mended.

Take care,

Geri

[Guest guest]

,

If you don't mind, I would like to hear more about your symptoms. Arnold

Chiari Malformation? Do you have spina bifida? Spina bifida runs in my

family and isn't Arnold Chiari Malformation sometimes related to it? I hope

you don't think I am prying or overstepping my boundaries. But, if I am you

can tell me so.

Thanks,

#4

[Guest guest]

Thanks, I hope your having a nice evening.

Love and Prayers,

#4

[Guest guest]

i haven't been dx'd with spina bifida. But that doesn't mean anything. I

read someone that they may be a connection but I couldn't tell you

anything about it yet. I did sent you a site with the list of the

symptoms.

** , Stinky's caretaker**

Our purpose in life is to have

a life of purpose.

[Guest guest]

Dear

Good news on your Dr Visit :-)

What is "arnold chiari malformation" ???

How is Stinky doing? Did the little thing need to see the vet?

Love Aisha.

[Guest guest]

Dear

Good news on your Dr Visit :-)

What is "arnold chiari malformation" ???

How is Stinky doing? Did the little thing need to see the vet?

Love Aisha.

[Guest guest]

,

I'm so glad that your MD is getting you a referral to a neuro. I looked at

the website you sent re: arnold chiari malformation. Thank you for sending the

link.

I hope you get some help with this, hon. What a sweet thing for your doc

to do to refill your inhalers.

Hope things are going well for you today babe.

*hugs*

andy24747@... wrote:

> good news. I got back from my doc. I went to talk to her, among other

> things, about the arnold chiari malformation. she agreed and is setting

> up a referal with a neuro.

>

> she also refilled my inhalers. even though she knows that i use it more

> for Stinky than for myself.

>

> bad news- she upped my blood pressure meds.

>

> ** , Stinky's caretaker**

> Our purpose in life is to have

> a life of purpose.

>

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[Guest guest]

Well saw the hepatiologist today. I really like this guy. He said that in

Europe, some studies have shown that even 1b genotypes can go 6 months if

enough other factors were good... I'm paraphrasing of course... like age

which he said 45 isn't bad, gender, female is better, and low viral load

when starting (1.3 million). I nodded my head, determined not to get angry

lol and said well what do you recommend? And he said well, let continue

treatment and if your labs stay ok then we'll finish the year. I'm like

whew! I'm not sure that I want to risk wasting the first 6 months on

treatment. I said my main complaint besides the fatigue was the migraines

I'm having, esp once a month, that don't want to respond to my usual meds.

So he is trying me on neurontin (sp?). We'll see how that goes.

Anyway, I'm still " UP " about my PCR. Makes it all worth it. (so far haha)

alley/

[Guest guest]

Good for you Pat! Hope the new Med works on those

headaches of yours....Take Care, Connie

--- " Ken & Pat @home " <alleypat@...> wrote:

> Well saw the hepatiologist today. I really like this

> guy. He said that in

> Europe, some studies have shown that even 1b

> genotypes can go 6 months if

> enough other factors were good... I'm paraphrasing

> of course... like age

> which he said 45 isn't bad, gender, female is

> better, and low viral load

> when starting (1.3 million). I nodded my head,

> determined not to get angry

> lol and said well what do you recommend? And he said

> well, let continue

> treatment and if your labs stay ok then we'll finish

> the year. I'm like

> whew! I'm not sure that I want to risk wasting the

> first 6 months on

> treatment. I said my main complaint besides the

> fatigue was the migraines

> I'm having, esp once a month, that don't want to

> respond to my usual meds.

> So he is trying me on neurontin (sp?). We'll see how

> that goes.

>

> Anyway, I'm still " UP " about my PCR. Makes it all

> worth it. (so far haha)

>

> alley/

>

>

>

__________________________________________________

[Guest guest]

ok, this didn't go through, i sent it like, 5 hours ago so sorry if it comes through twice

well, dor's visit today went well, other than having an appt at 10.30 and being seen at noon lol but the doc apologized like, 5 times, so all was forgiven

i signed a vax waiver, no problems there yay :-)

dor is 16.5 pounds, which is 70th% and 28 inches, which is off the charts, and his head was 43cm

azx

[Guest guest]

I am really sorry that you doc isnt responding to your case very well. I guess in some cases doctors feel like they know all, but with something they obviously don't, even with somehting not rare! But sometimes welcome advice others almost forbid it and will not stand for it. I really hope that things do start to look up for you in the new year

Patti~Canada

Doc visit

Hi allI went to see the rheumatology prof yesterday. He maintains that as I didn't respond to pred, then he doesn't know for sure if it's Stills, as the 15 AOSD patients he's known have all responded well to pred. I mentioned that I was in touch with over 200 AOSD people, and a number of then had also not responded positively to pred, but had done better with an alternative steroid. He wouldn't discuss this. He told me to go swimming and call him after our holiday to Oz, after which I 'was bound to be feeling much better'. Being cold and wet makes me feel ten times worse, and the movement of the water hurts my joints. I mentioned this, but he said to find somewhere warm and wet. I shall get my hubby to dig a pool in the back garden this very evening... I also tried to mention that in the past 2 weeks I was getting rashes and increased joint pain and have a number of enlarged lymph nodes, but he didn't comment or even write it down. I despair.Today I have done some research and as far as I can tell, there are no AOSD specialists in the U.K.Anyway. I shall keep taking the painkillers and go away for the Christmas holiday. Then see what my options are in the new year.Sorry to sound so fed up. Actually, just writing it all down has helped. Thanks!Love to allC 2

[Guest guest]

Caroline #2,

Sweety, it sounds like my old doctor moved and is the one who is now

*not* treating you!

If he has 15 AOSD patients you would think that he would know by now,

that even though they all have the diagnosis AOSD, they are still (if even

a teenie weenie bit ) different. Most of us here either react to the same

meds a little differently etc.

Please try to get a srcipt for something for some relief so you can enjoy

not only your family, but also your holiday.

No need to apologize for feeling "fed up" I do believe most of us have felt

that way at one time or another with this dragon wanting to share our lives

with us.

Hoping you find relief soon.

Your friend from Wisconsin USA

Tricia

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

-- Doc visit

Hi allI went to see the rheumatology prof yesterday. He maintains that as I didn't respond to pred, then he doesn't know for sure if it's Stills, as the 15 AOSD patients he's known have all responded well to pred. I mentioned that I was in touch with over 200 AOSD people, and a number of then had also not responded positively to pred, but had done better with an alternative steroid. He wouldn't discuss this. He told me to go swimming and call him after our holiday to Oz, after which I 'was bound to be feeling much better'. Being cold and wet makes me feel ten times worse, and the movement of the water hurts my joints. I mentioned this, but he said to find somewhere warm and wet. I shall get my hubby to dig a pool in the back garden this very evening... I also tried to mention that in the past 2 weeks I was getting rashes and increased joint pain and have a number of enlarged lymph nodes, but he didn't comment or even write it down. I despair.Today I have done some research and as far as I can tell, there are no AOSD specialists in the U.K.Anyway. I shall keep taking the painkillers and go away for the Christmas holiday. Then see what my options are in the new year.Sorry to sound so fed up. Actually, just writing it all down has helped. Thanks!Love to allC 2

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Caroline #2,

Sweety, it sounds like my old doctor moved and is the one who is now

*not* treating you!

If he has 15 AOSD patients you would think that he would know by now,

that even though they all have the diagnosis AOSD, they are still (if even

a teenie weenie bit ) different. Most of us here either react to the same

meds a little differently etc.

Please try to get a srcipt for something for some relief so you can enjoy

not only your family, but also your holiday.

No need to apologize for feeling "fed up" I do believe most of us have felt

that way at one time or another with this dragon wanting to share our lives

with us.

Hoping you find relief soon.

Your friend from Wisconsin USA

Tricia

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

-- Doc visit

Hi allI went to see the rheumatology prof yesterday. He maintains that as I didn't respond to pred, then he doesn't know for sure if it's Stills, as the 15 AOSD patients he's known have all responded well to pred. I mentioned that I was in touch with over 200 AOSD people, and a number of then had also not responded positively to pred, but had done better with an alternative steroid. He wouldn't discuss this. He told me to go swimming and call him after our holiday to Oz, after which I 'was bound to be feeling much better'. Being cold and wet makes me feel ten times worse, and the movement of the water hurts my joints. I mentioned this, but he said to find somewhere warm and wet. I shall get my hubby to dig a pool in the back garden this very evening... I also tried to mention that in the past 2 weeks I was getting rashes and increased joint pain and have a number of enlarged lymph nodes, but he didn't comment or even write it down. I despair.Today I have done some research and as far as I can tell, there are no AOSD specialists in the U.K.Anyway. I shall keep taking the painkillers and go away for the Christmas holiday. Then see what my options are in the new year.Sorry to sound so fed up. Actually, just writing it all down has helped. Thanks!Love to allC 2

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

HI,

I do not like your doctor........ I wish you could find another one as this guy seems to be very opinionated in only his way of thinking. All your symptoms sure sound like Stills to me. Hey.....!!....... How about if the Stilligans here in our group, write you a short note saying that they have been diagnosed with Stills and they do not respond to Prednisone. Then you could print them out and shove them under his nose. I'd like to be the first but I do respond to it. It is my "favorite" drug..... )

Enjoy your Christmas vacation.

Mi. Carmen

[Guest guest]

HI,

I do not like your doctor........ I wish you could find another one as this guy seems to be very opinionated in only his way of thinking. All your symptoms sure sound like Stills to me. Hey.....!!....... How about if the Stilligans here in our group, write you a short note saying that they have been diagnosed with Stills and they do not respond to Prednisone. Then you could print them out and shove them under his nose. I'd like to be the first but I do respond to it. It is my "favorite" drug..... )

Enjoy your Christmas vacation.

Mi. Carmen

[Guest guest]

Dear Caroline 2, please be careful as you can on vacation and pamper

yourself as much as you can. I know that finding a doctor to understand is

sometimes harder than having Stills. I would suggest you let your GP know

and see if he/she could recommend another doctor. Sometimes it takes months

plus another medication to show a difference with this disease. Much

support for you across the ocean. Melt

----- Original Message -----

From: " Caroline Baylis " <caroline@...>

> Hi all

>

> I went to see the rheumatology prof yesterday. He maintains that as I

> didn't respond to pred, then he doesn't know for sure if it's Stills,

> as the 15 AOSD patients he's known have all responded well to pred.

[Guest guest]

Very tempting Carmen! If I thought it would work, I'd do it!

Love

C 2

On 12 Nov 2003, at 00:41, pscarmen@... wrote:

> HI,

> I do not like your doctor........    I wish you could find another one

> as this guy seems to be very opinionated in only his way of thinking. 

> All your symptoms sure sound like Stills to me.  Hey.....!!....... 

> How about if the Stilligans here in our group, write you a short note

> saying that they have been diagnosed with Stills and they do not

> respond to Prednisone.  Then you could print them out and shove them

> under his nose.  I'd like to be the first but I do respond to it.  It

> is my " favorite " drug.....  )

> Enjoy your Christmas vacation.

> Mi. Carmen

>

>

>

>

[Guest guest]

Very tempting Carmen! If I thought it would work, I'd do it!

Love

C 2

On 12 Nov 2003, at 00:41, pscarmen@... wrote:

> HI,

> I do not like your doctor........    I wish you could find another one

> as this guy seems to be very opinionated in only his way of thinking. 

> All your symptoms sure sound like Stills to me.  Hey.....!!....... 

> How about if the Stilligans here in our group, write you a short note

> saying that they have been diagnosed with Stills and they do not

> respond to Prednisone.  Then you could print them out and shove them

> under his nose.  I'd like to be the first but I do respond to it.  It

> is my " favorite " drug.....  )

> Enjoy your Christmas vacation.

> Mi. Carmen

>

>

>

>

[Guest guest]

Tawny we will be thinking of you. I will be leaving around 8 to go pick

up Chas from DFW so I am excited! Enjoy your time with your daughter,

and take it easy, sweetie, don't overdo things. I know I don't have to

say that but sometimes when we have one moving in we tend to do more

than we realize we're doing. Love to you.

Jane

> Hi everyone,

> Sorry that I didn't get to post yesterday, it was a long day. I went

> to my visit, and the doctor couldn't really see anything in the x-

> rays. If it continues to bother me, they will do a MRI. The patches

> still haven't came in, so I'm in some pain.

> Today is move day for my daughter, so I am so excited. Will be

> thinking about you all, luv T

[Guest guest]

Debbie - Im in Dallas Texas. I have a great Dr. here who has treated me for

over 6 years. She told me that over half of all her lyme patients are from

Oklahoma! You are in tick country!

hlink.net> wrote:Just back from the " new " doctor, this one is a MD. He

pulled about 8 tubes of blood for testing. I asked if this was for the QRIBb

test - he had not heard of that one, so I told him about it! First he's

checking for Lyme titers, Rocky Mt. Spotted Fever, and Ehrlichia. Using the

Western Blot and ELISA. If nothing shows up on that, I'm pushing for the QRIBb,

even if it's out-of-pocket expense. Also doing a Sed Rate test.

Got half way home and wondered why they weren't testing for Babesiosis as well -

called them back. Have not heard from the lab tech on that one.

Also scheduled for another MRI next week . . . SO GLAD that this doctor is

taking things seriously! I mentioned some of the other people that I've dealt

with and he groaned when I mentioned the neurologist's name. Going to give me a

neuro consult too.

Consult . . . MRI . . . and blood tests . . . I think I'm going to like this

doctor much better! If he keeps showing this level of care, maybe he'll be a

LLMD . . . time will tell. I know that there are no LLMDs listed with the

" foundation " for referrals in Oklahoma or Arkansas. That surprises me; we're

right in the heart of tick country.

Debbie Dahl

[Guest guest]

Congrats on your successful doctor's visit!

And your experience is just another example of how we have to manage

our own health care. If your doctor is taking you seriously or

treating you with respect, fire him or her and move on.

Jessie

>>

> Consult . . . MRI . . . and blood tests . . . I think I'm going to

like this doctor much better! If he keeps showing this level of

care, maybe he'll be a LLMD . . . time will tell. I know that there

are no LLMDs listed with the " foundation " for referrals in Oklahoma

or Arkansas. That surprises me; we're right in the heart of tick

country.

>

> Debbie Dahl

>