Re: Finally Diagnosed

November 11, 2000

i don't i found that being dx'd was a relief. I could say I told you so

And the questing never stops. First you quest for the answer and then

when you get it, you look for ways to deal with it. What things can you

do that makes it more bearable. I never stop researching, just now the

search is more focused cos i know what i'm looking for.

** , Stinky's caretaker**

Our purpose in life is to have

a life of purpose.

November 13, 2000

"i don't i found that being dx'd was a relief. I could say I told you so :)"

LOL well yes there is that aspect to it. But in the end my family dont believe the Dr's and I have nothing to do with them so no need for it. Another positive is that you have it confirmed that you are not some wacko, that you are actually sick. (Or your child/loved one is.) You can get disability etc etc...

"And the questing never stops"

It does for some, or more to the point the quest stops and the fight starts all depending on what X actually turned out to be.

My point was that on the one hand you want the label and the diagnosis so you know whats going on, can tell people to shove it up their bums, and get treatment for it, but the flip side is you might be diagnosed with something rare, incuraable, untreatable, progressive or terminal that even the Drs dont know much about or cannot cure.

We are bought up with the general thinking that you are not well, you know that, you see a Dr, you get told you have X, you get put on X, and then in a little while X is gone, in remission, controled or cured. Thats what we hope for. Thats what we are lead to belive. Thats what I hope for all of you questing for answers, that X is curable/manageable and you get your life back.

However, when you are questing you usually dont think that X could be rare, progressive or terminal. You are focused on finding out what X is so you can be treated, managed and get your life back. You live on hold waiting for the next appointment with whatever ologist is next. You dont stop to think that the Drs wont know what to do, what to suggest, who you should see, or be able to do anything further for you.

I dont want to put a downer on anyones situation. I know that it is essential to quest and find the answers for knowledge is power. At the same time, if you have been fighting for a label for yourself or your children/loved one, when you actually get that label, that might be when the real fight starts. The one for you or your loved ones life.

For me, I was diagnosed with a rare disease of which I know about as much as the medical profession. My problem is that they are still ambivalent about some of my symptoms so while we know what it is, we can treat it the best we can, the reality is that there is nothing to research. Hell I am the living case study providing the research.

Sure the Drs and I keep up to date, but there is no more questing as you know all there is to know, have tired all there is to try, have seen all the specialists there are to see and at the end of the day, you still have X.

As I said, my main point was that while you need that label - for there is no question that you need that label in order to move forward, the end diagnosis might not be what you are expecting.

I guess I know how shocked I was when I was told I have a serious illness and will have it for life. The reality of it is only just starting to sink in and my label was a year ago. I want to save you all from that shock, but I guess no matter what I say you will never be prepared for the Dr telling you that you have X. Its such a personal thing. None of us will know until you get your diagnosis what will happen next and how it will affect you. I just didn't want anyone going through what I had that's all.

Love Aisha

June 26, 2001

Hi ,

I hope Clarice has been feeling somewhat better. And I hope you're doing

alright, too. I know you've probably heard it said here before but the

beginning stages are usually the very hardest to deal with. It should

start getting better soon. How has it been in the night-time? Is Clarice

feeling any more comfortable and able to sleep, yet?

Over time, in very simplistic terms, I've seen two very different types

mentioned here. The children, like your daughter, who have a rough time

being able to sleep because of things associated with their JRA. And the

other type, like my son, who spend enormous amounts of time in a very

deep sleep when their arthritis is active. I know that when you're

having long days and late nights filled with worry you hope for a

restful sleep for the both of you but I do remember periods when Josh

spent so much time sleeping, in lieu of playing, eating, and basically

everything else we do during our waking hours ... that I used to be so

saddened and worried. Had to keep checking to make sure he was okay.

Thought he would sleep right through his entire childhood, sometimes. A

mini-Rip Van Winkle His friends would come over and knock on the

door, checking on and asking for him, but it was always the same answer.

Josh is still resting. Why not check back later? Very different

circumstances but upsetting, just the same.

Have the doctors prescribed anything other than just the tylenol and

motrin, yet? Has Clarice had recent bloodwork done to look at her CRP or

SED rate? How's her knee feeling? Is she still limping?

Just wanted you to know that we're thinking about you both. And hoping

that things will start to get better, soon. Let us know, okay?

Aloha,

Georgina

PS ... Any luck yet, with getting co-operation from the pediatrician

about releasing your daughter's medical records? When we were at the

doctors the other day I asked about that. Here, they charge you 10 cents

a page for personal use. Free, if it's to be forwarded to another

doctor.

clarabell1234@... wrote:

>

> Hello everyone:

>

> Clarice had a 3 day stay at All childrens hospital. Her doctor wanted to rule

> out some very serious diseases before we called this JRA. She finally got

> some inflamation in her knee while we were there. So now she is scheduled for

> an MRI of that knee and a diagnosis of Mild JRA at this time. Where we go and

> what we do next is still a mystery. I will keep everyone updated as things

> develop. Thanks to everyone for there help.

>

December 12, 2002

Hi Sherm

I know how it feels to finally get a diagnosis and then told that you had

better retire as it is all downhill from there.

I am happy that you finally got the diagnosis and we will keep you in our

prayers.

It is tough news to swallow. I went totally in to the pity party route for

the first few months, then into the denial stage. Neither one is the

greatest choice.

Since you are in the more advanced stages, I would suggest possibly getting

some re training so that you can at least do some volunteer work or other

hobbies.

I moved into the priesthood after retraining and a total change of

lifestyle, but still have to watch my level of activity.

As you well know, we are very limited in what we can do. Sitting and

standing for lengthy periods is a killer, we have to learn how to get around

that. For me, keeping on the move almost constantly works even if it is

just a few steps. Hazel thinks I am a perpetual motion machine.<GBG>

+Dave

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December 12, 2002

I am taking Enbrel for Reiter's. I am not well by any means but I think I am

better. I take it in conjunction with metholtrixate.

Joy

December 15, 2002

In a message dated 12/15/02 8:01:33 PM Eastern Standard Time, ralqoutob@... writes:

I only flair up about once a year, it usually happens a few weeks before I show cold symptoms, it starts with terrible joint pain, I cant even get out of bed, then I get a blood test and my two liver enzymes are in the thousands. After a few weeks of joint pain, fatigue and elevated LFT's, IgG, etc

Wow Rhonda, I am anxious to hear the results of your liver biopsy. I am only on my second flare and both flares have been different. I luckily had 6 healthy years between my flares, and hope and pray that I have more than that this time.

Cheryl

December 15, 2002

Rhonda, since you IgG was elevated, have you had the doctor look into Celiac

Sprue? That was how mine was dx. Gosh, you have had a terrible time with

the pain. I think it is the joint pain that is the worse for me!

Debby

[ ] Finally Diagnosed

> I have AIH and was finally diagnosed 1/01, despite having every sign

> and symptom since I was 4 years old (I'm 32 now). It started with me

> at 4 when I was diagnosed with ulcerative colitis, I was on

> Prednisone until I was 9 and there was nothing else they could do so

> they performed an ileostomy..ever since I was 4 though, the Dr.'s

> periodically diagnosed me with viral hepatitis (even though my

> serologies were negative for all) because I was presenting with

> hepatitis symptoms (elevated LFT's and jaudnice). I spent many years

> with flare-ups (especially joint pain) and the MD's kept diagnosing

> me with this virus and that virus. Thank goodness Im an RN and knew

> enough to search to find out why my LFT's were elevated, my IgG was

> very high, etc...I refused a liver biopsy last year (doesnt look very

> pleasant from a nurse's perspective) and Im stubborn..every year my

> flare ups are worse..this year (next week) will be my first liver

> biopsy..this is the first time also I've taken Prednisone (I have a

> very bad DEXA scan from previous Prednisone, so Im trying not to take

> it)...I am very happy I found this site, I havent been so depressed

> in all my life, I know no one else with this disorder, I feel like I

> have been handed a sentence...just going through a bad time and a

> painful flare-up, thanks for listening...I hope everyone is

> well..Rhonda A. from NY

>

December 16, 2002

>

> From: " tdcc " <tdcc2000@...>

> Date: Sun 15/Dec/2002 23:23 GMT

> < >

> Subject: Re: [ ] Finally Diagnosed

>

> Rhonda, since you IgG was elevated, have you had the doctor look into Celiac

> Sprue? That was how mine was dx. Gosh, you have had a terrible time with

> the pain. I think it is the joint pain that is the worse for me!

> Debby

> [ ] Finally Diagnosed

>

> > I have AIH and was finally diagnosed 1/01, despite having every sign

> > and symptom since I was 4 years old (I'm 32 now). It started with me

> > at 4 when I was diagnosed with ulcerative colitis, I was on

> > Prednisone until I was 9 and there was nothing else they could do so

> > they performed an ileostomy..ever since I was 4 though, the Dr.'s

> > periodically diagnosed me with viral hepatitis (even though my

> > serologies were negative for all) because I was presenting with

> > hepatitis symptoms (elevated LFT's and jaudnice). I spent many years

> > with flare-ups (especially joint pain) and the MD's kept diagnosing

> > me with this virus and that virus. Thank goodness Im an RN and knew

> > enough to search to find out why my LFT's were elevated, my IgG was

> > very high, etc...I refused a liver biopsy last year (doesnt look very

> > pleasant from a nurse's perspective) and Im stubborn..every year my

> > flare ups are worse..this year (next week) will be my first liver

> > biopsy..this is the first time also I've taken Prednisone (I have a

> > very bad DEXA scan from previous Prednisone, so Im trying not to take

> > it)...I am very happy I found this site, I havent been so depressed

> > in all my life, I know no one else with this disorder, I feel like I

> > have been handed a sentence...just going through a bad time and a

> > painful flare-up, thanks for listening...I hope everyone is

> > well..Rhonda A. from NY

> >

December 17, 2002

Cheryl,

I am interested in your symptoms you experienced with your 2 different flares. My mom also had six healthy years between her flares. Likely coincidental, but you never know with all the variations in this disease.

Thanks,

Kat

Re: [ ] Finally Diagnosed

In a message dated 12/15/02 8:01:33 PM Eastern Standard Time, ralqoutob@... writes:

I only flair up about once a year, it usually happens a few weeks before I show cold symptoms, it starts with terrible joint pain, I cant even get out of bed, then I get a blood test and my two liver enzymes are in the thousands. After a few weeks of joint pain, fatigue and elevated LFT's, IgG, etcWow Rhonda, I am anxious to hear the results of your liver biopsy. I am only on my second flare and both flares have been different. I luckily had 6 healthy years between my flares, and hope and pray that I have more than that this time.Cheryl

July 24, 2008

Glad you finally got answers but wow what a jerk. My doc is totally

supportive of my doing research on my own. Infact shes impressed with

my record keeping and totally trusts my judgement on treatment of

Cameron. She initally told us about but I have done tons of

research and brought up the idea of T an A to her and she said that she

prefers to wait until hes 4-5 year old (hes 2.5 now) because the

recovery is easier to explain to them. Im just surpised at this guys

aditude. Hope you find a good one soon.

and Willoughby

Cameron 2.5()

little girl (due 10-6-08)

July 24, 2008

I don't know what to say, except that doctor needs to be kicked to the curb!

What a jerk! What kind of parent would you be if you did not do research on

your own? My son would not be as healthy as he is now if it was not for all the

research I did on his behalf. If I'd of trusted doctors I would still be

pouring antibiotics into his body and would have already had a few spinals and a

bone marrow test, instead we are fever free for the last 10 weeks!

Good Luck, sorry to hear you had to deal with such arrogance.

Maybe he needs to go back and do a little research on T & A's (actually I have

read medical journals myself and I would be happy to give him a lesson to brush

up on the latest research, including a few recent studies:-)

July 24, 2008