Re: Diagnosis Me

[Guest guest]

Anne

Oh my your have hit the nail right on the head. We ( and amber) have

been through that too. we have an apt today Friday 9-15-00 and we have to ask

why the DR hasn't taken a CT scan or mri to make sure that there isn't a new

injury from the last surgery in 1999. they are looking at CT scan and mri of

1997 . so we have decided to have a chat with the dr. this should be fun not.

we are going to tell him if this was someone he loved what would be do.

instead of doing nothing.

our favorite motto is: IM paying the DR if they do not like what i have to

say i will find someone who will. beside we have to remember we are there

employers we pay them.( or the insurance) and if we have a problem with them

we need to let the insurance handle it. my insurance company has been

wonderful we had a run in with a physical therapist who was a total jerk and

had upset my wife i called the insurance company they were very happy to take

my complaint.

oh the DR told me that my wife couldn't got to an allergist well tough we

have to insurance's so screw him. the first one may reject but at least with

the second they will pay. so my wife can get some help with out having to

beg to the DR like a little kid wanting a piece of candy.

well that enough of my babble

take care all and Anne good luck

just remember that we are hear for you and that your are the BOSS

and Amber

[Guest guest]

Dear Anne,

The only thought I have is that allergies are caused by immune dysfunction just like any auto immune illness. Perhaps being referred to an immunologist might be a good start? There may be more going on, as well as your allergies. Most immunologists are also allergists from what I have seen.

Last night I had a severe myoclonic attack due to the smell of some stupid flower blooming at 2am. I had to drug up big time just to get through it. This wasn't an allergy for me - it was a neurological response due to an auto immune disease. It took neuro meds and aspirin etc to stop it. Perhaps you have something similar?

That's what makes me think that perhaps its time they re-did your IG's and other immune function profile tests, just to make sure that there is nothing else going on aside from allergies which are already an illness and indicate immune dysfunction.

Just a thought!!

Hang in there - someone's gotta have answers somewhere?!

*gentle hugs*

Aisha.

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ: #55461955 MSN: Aisha <---- most reliable emergency contact.AIM: aishaelderwynIRC: DALnet # (angel`isha)email: aisha@... website: http://www.elderwyn.com/aishaBeing Sick: Mailing List: aishaelderwyn

[Guest guest]

Ok - War is declared ..... What did you have to go through to get a diagnosis for yourself or your loved one? And/or what are you still having to go through to get the assistance you know you need? Tell us the nightmares you have had to go through, the dr's/practitioners you have seen who were stupid, and how it affected you! xox A.

[Guest guest]

Oooooh This is so well said that it will have to go in my book!

"The problem with me looking into what else could be wrong with me, is that they use my "checking things out" about this or that problem, as just ONE more symptom to make their diagnosis as it being all psych! If I don't do anything and I get sicker, then it is psych because I didn't do anything about it.... I waited until I was so sick that they would have to give IV antibiotics, or they would have to take drastic measures to save my life. If I go to them about this or that, do I have this or that.... then I am just trying to get attention, trying to say I have this or that, and therefore I am causing my own illness. So no matter what I do or say, I am a psych patient! Whether I am purplish gray or breathing without effort.... I am just full of shit! Ya, Whatever!!"

Anne .... I had all the same labels from so many pricks, but if I had not looked into my disease and asked around, and even gone to new doctors when specialists told me not too I would be dead now. In the end it was me that said "what about X"

Specialist A (Dr no.13) had one piece of the puzzle, Specialist B (Dr no.24) had another but they couldnt connect them. It was a doctor in the USA who wrote to me via a newsgroup posting for a "Doctors Only" newsgroup that pieced it together. Now if I had not done the research and asked as many people as possible then this would never have happened.

So screw em all babe and do what you need to do to get well. If they were sick they would.

Love a hyper Aisha ...

*grins*

Love Always, Anne The Being Sick CommunitySharing our resources:-Add a website URL you think may help another, or even add a link to your own webpage. Chat:- Scheduled Daily Chats at # on IRC DALnet.http://www.elderwyn.com/members/chat.htmlEgroups JAVA based chatroom for your use anytime:-chat/ (Anyone on web-tv will not be able to access java and it is very slow compared to IRC.)Memorial Page:-http://www.elderwyn.com/members/inlovingmemory.htmlMembers Lounge:-Medical resources, counselling via email, information on the daily chat times, free psychic readings and the cartoon of the day. http://www.elderwyn.com/members Members Profiles, pictures, and birthdays:-Message Archives and Digest Attachment Pictures:-messages/Promoting This Community:- Would you like people to be able to join from your webpage?promote/Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit mygroupsTo subscribe or unsubscribesubscribe/ ~~~~~~~~~~~~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer

[Guest guest]

Faulkncs@... wrote:

> I hate to complain because everyone is so great, BUT I have very bad eyes and

> some of the colors make it impossible for me to read the post. All I can do

> is delete the colored ones. Thanks for your consideration.

>

> Love and gentle Hugs

> Carolyn

>

Carolyn,

I think there is a way that you can get all your messages in black and white no

matter what the color it is typed in by the writer. I just don't know how to

tell you the way to do it.

Ahh!

Anne

[Guest guest]

Aisha Elderwyn wrote:

Oooooh

This is so well said that it will have to go in my book!

Go ahead,

as long as I get mentioned in your book. "The

problem with me looking into what else could be wrong with me, is that

they use my "checking things out" about this or that problem, as just ONE

more symptom to make their diagnosis as it being all psych!

If I don't do anything

and I get sicker, then it is psych because I didn't do anything about it....

I waited until I was so sick that they would have to give IV antibiotics,

or they would have to take drastic measures to save my life.

If I go to them about

this or that, do I have this or that.... then I am just trying to get attention,

trying to say I have this or that, and therefore I am causing my own illness.

So no matter what I do

or say, I am a psych patient! Whether I am purplish gray or breathing

without effort.... I am just full of shit! Ya,

Whatever!!"

Ahhh! Anne

..... I had all the same labels from so many pricks, but if I had not looked

into my disease and asked around, and even gone to new doctors when specialists

told me not too I would be dead now. In the end it was me that said "what

about X" Specialist A (Dr no.13)

had one piece of the puzzle, Specialist B (Dr no.24) had another

but they couldnt connect them. It was a doctor in the USA who wrote to

me via a newsgroup posting for a "Doctors Only" newsgroup that pieced it

together. Now if I had not done the research and asked as many people as

possible then this would never have happened.

This

is the reason that I just keep looking.... My primary insurance says

that I have to have referrals to go to specialists... well, with 3 different

types of insurance BC/BS; Medicare A & B; and Medical Assistance (Medicaid)...

tough!

I have

an appointment to see an:

Endocrinologist

on Monday September 25th

++about

my PMS & hopefully getting it treated

++now

I will also be checking out the whole diabetic issue

*since I have been high risk for a LONG time!

*family history, steroids, fat cow, etc.

Cardiologist

on Friday October 20th

++to

have my heart murmur checked out

....since

it is due to damage of my heart done by all the allergies So

screw em all babe and do what you need to do to get well. If they were

sick they would.

Yes,

and I tell my doctor the same thing on a regular basis... only I ask if

this was his child... would he automatically assume that since that child

does not fit into "textbook definitions" that it was all psychologically

/ psychiatrically based? I do NOT think so!

So he

can stick it up his nose!!

Love

Always!

Anne

[Guest guest]

Oooooh

This is so well said that it will have to go in my book!

My SIL is an attorney that deals with manuscripts with getting books on

the market. If you truly are serious let me know!

Go ahead,

as long as I get mentioned in your book. "The

problem with me looking into what else could be wrong with me, is that

they use my "checking things out" about this or that problem, as just ONE

more symptom to make their diagnosis as it being all psych!

If I don't do anything

and I get sicker, then it is psych because I didn't do anything about it....

I waited until I was so sick that they would have to give IV antibiotics,

or they would have to take drastic measures to save my life.

If I go to them about

this or that, do I have this or that.... then I am just trying to get attention,

trying to say I have this or that, and therefore I am causing my own illness.

So no matter what I do

or say, I am a psych patient! Whether I am purplish gray or breathing

without effort.... I am just full of shit! Ya,

Whatever!!"

This is sooooo common, believe me. If they can see

what is wrong, take a test that shows you're in pain, you have to have

a doctor that believes you no matter what. I know I've gone through the

same thing, and you have to just down out and tell them where they stand.

That you know what you're talking about, they don't have the RIGHT to say

you don't. Thousands of men and women go this particularly interesting

experience when going for FMS/MPS/CFS. I'm sure any one with any of these

have gone through it at least once. While I was working for a doctor, and

wanted to get a second opinion, a "well known doc" in our town, suggested

that I get a book on OBSCESSIVE COMPULSIVE DISORDER. IT'S A MIRACLE THAT

DOCTOR IS STILL LIVING! I NEVER WENT BACK. THIRD OPINION WENT GREAT WITH

A RHEUMIE IN MODESTO, ABOUT AN HR FROM US.

Ahhh!

Anne .... I had all the same labels from so

many pricks,

lest we not forget the "prickettes"

but if I had not looked

into my disease and asked around, and even gone to new doctors when specialists

told me not too I would be dead now. In the end it was me that said "what

about X" Specialist A (Dr no.13) had

one piece of the puzzle, Specialist B (Dr no.24) had another but

they couldnt connect them. It was a doctor in the USA who wrote to me via

a newsgroup posting for a "Doctors Only" newsgroup that pieced it together.

Now if I had not done the research and asked as many people as possible

then this would never have happened.

This

is the reason that I just keep looking.... My primary insurance says

that I have to have referrals to go to specialists... well, with 3 different

types of insurance BC/BS; Medicare A & B; and Medical Assistance (Medicaid)...

tough!

I have

an appointment to see an:

Endocrinologist

on Monday September 25th

++about

my PMS & hopefully getting it treated

++now

I will also be checking out the whole diabetic issue

*since I have been high risk for a LONG time!

*family history, steroids, fat cow, etc.

Cardiologist

on Friday October 20th

++to

have my heart murmur checked out

....since

it is due to damage of my heart done by all the allergies

So screw em all babe and do what you need to

do to get well. If they were sick they would.

Yes,

and I tell my doctor the same thing on a regular basis... only I ask if

this was his child... would he automatically assume that since that child

does not fit into "textbook definitions" that it was all psychologically

/ psychiatrically based? I do NOT think so!

I'd be interested to know

what your diagnoses have been so far? Do you have pain? If so, on a scale

from 1-10 with 10 being the worst, what is it usually? Does stress affect

it?

So he

can stick it up his nose!!

Love

Always!

Anne

[Guest guest]

ACK!! Ok, Aisha, you asked for it!! lol

When Matty was born, he couldn't hold his body temperature up. At least

that's what we thought at the time (turns out he had autonomic nervous

system dysfunction--no temperature regulation capability). The doctors

there put him under heat lamps, and told me not to worry, that he would

be just fine. It didn't make any sense to me, because Matty, although

puny compared to my other kids, was still a perfectly normal weight. He

weighed 5 pounds, 15 ounces at birth (my other kids were 6#15, and 8#5).

Our pediatrician opted to send him home the next day, even though he

still got very cold when we turned the lamp off. Even skin-to-skin

contact with blankets on top couldn't keep him warm. But ya know, I

trusted our doc, and believed that everything would be okay as long as I

kept him nice and covered up at home.

When we got home, I immediately started noticing little things that

seemed wrong to me. Nothing that I could put my finger on, tho, until

Matty was about 2 weeks old.

At that time, he began projectile vomiting after every feeding. He also

developed a really nasty, wet cough. I called the doc, who told me that

1) Matty was allergic to his formula, to switch him to soy formula, and

2) Matty had swallowed amniotic fluid during his birth, that he would

either absorb it or cough it out, so no problem.

I switched Matty to soy formula (what a mistake!!--turns out kids with

mito often can't digest soy at all!! ) Almost immediately, he began

puking even more, and on top of that, his stools turned very fatty and

oily. Yes, oily. Sorry, I know it's gross, but you could actually take

your finger and wipe oil off of his little butt. It looked like someone

had poured cooking oil in his diaper.

Also, his cough didn't get better, but instead got worse. So back to the

doc, who didn't seem worried about the stools at all, nor was he worried

that Matty was not gaining weight like he should have been. He also said

that ok, Matty had a cold, that's why he was coughing.

When I said that I wasn't satisfied with those explanations, the pedi

set into telling me that Matty wasn't sick, that I should quit

pretending like he was, that I was being paranoid and that I was

projecting my unhappiness and stress (I was going through a separation

then, and had just filed for divorce) onto the baby.

So on it went like this, and gradually, Matty just kept getting worse.

Matty began eating huge amounts of formula at a sitting (8-10 ounces)

and then immediately vomiting it...projectile vomiting it. I have never

in my life seen a person vomit so forcefully. His stools continued to

get worse. His cough continued to get worse. He began to lose

coloring...he was getting very pale. He began sleeping more and more.

Still, our pedi insisted that Matty was a healthy, normal infant, and

that there was absolutely nothing wrong with him. In the pedi's words, I

had had a perfect pregnancy (true), a perfect delivery (true), and had a

perfect baby (well, yeah, he was perfect, but NOT perfectly healthy!!)

So, one week, I got really, really worried about Matty. He had almost

quit eating all together, but would still vomit. He was so pale, even

his lips were white. And he was sleeping way too much and way too

soundly. He was, at this point, sleeping 22 to 23 hours a day. He was 3

months old.

I called the doctor every day that week, begging him to see Matty. Day

after day, he refused. So on Saturday, I took matters into my own hands.

I took Matty to my MOM!! (lol) I was crying before I ever got there. I

knew, in my gut, that Matty was dying. When we got there, I walked in

the house, handed Matty to my mom, and told her to look at him. I told

her, if you don't think there's anything wrong, then I'll take him home.

But if you can't look at this baby and tell me that everything is

normal, then I want you to take us to a hospital.

She took one look at Matty (she hadn't seen him for about a month at

this point), and told me to switch the kids carseats to her car, we were

going to the hospital.

We took him into the ER...the triage nurse asked me why I had brought

him. I didn't say a word, I just took the blanket off of his face. She

took one look at him and started yelling for a doctor.

They took him to an exam room, started an IV and drew blood. That CBC

came back so fast, I think the doc must have threatened someone with

their life!! lol Immediately they called for ambulance transport to

take Matty to Riley, our specialty children's hopsital...he needed a

neonatal ICU and the hospital we were at didn't have one. The only thing

I remember from that CBC was Matty's hemoglobin...it was at 2.5. Low

normal for that age, I think, is 11 or 12.

At that time, Matty was transferred to the ICU. Final

diagnosis...Pancytopenia (low blood count in all 3 lines, white blood

cells, red blood cells, and platelets), severe anemia, double pneumonia

( two-thirds of Matty's right lung was filled with pneumonia), and strep

pneumo sepsis (the pneumonia bacteria had translocated into his

bloodstream), failure to thrive ( at birth, Matty was 5#15, at 3 months

old, he was 7#12). AND UNKNOWN ACIDOSIS DISORDER, PRESUMABLY

MITOCHONDRIAL. Of course, we later found a name for that

disorder...Pearson's syndrome.

The doctors at Riley told me later that Matty would have died within the

next 48 hours had we not sought help when we did. After I had been

begging his doctor for months to help him!!

So...moral of the story is....always trust your gut feelings Yes,

Matty did die, but I had 14 months with him that I wouldn't have had if

he had died then.

I'm attaching a picture of Matty as he looked at that time...well, I

think the pic was taken about 3 weeks before he went to Riley. I

challenge any of you to tell me that he didn't look sick, even then

You asked for it, that's our story

(I have another one for a later time, but I'm too tired to write it now

love,

Aisha Elderwyn wrote:

> Ok - War is declared ..... What did you have to go through to get a

> diagnosis for yourself or your loved one? And/or what are you still

> having to go through to get the assistance you know you need? Tell us

> the nightmares you have had to go through, the dr's/practitioners you

> have seen who were stupid, and how it affected you! xox A.

>

>

> The Being Sick Community

>

> Sharing our resources:-

> Add a website URL you think may help another, or even add a link to

> your own webpage.

>

>

> Chat:-

> Scheduled Daily Chats at # on IRC DALnet.

> http://www.elderwyn.com/members/chat.html

>

> Egroups JAVA based chatroom for your use anytime:-

> chat/

> (Anyone on web-tv will not be able to access java and it is very slow

> compared to IRC.)

>

> Memorial Page:-

> http://www.elderwyn.com/members/inlovingmemory.html

>

> Members Lounge:-

> Medical resources, counselling via email, information on the daily

> chat times, free psychic readings and the cartoon of the day.

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>

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>

>

> Message Archives and Digest Attachment Pictures:-

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> ~~~~~~~~~~~~~~~

>

> “Hold on to what is good, even if it's a handful of earth. Hold on to

> what you believe, even if it's a tree that stands by itself. Hold on

> to what you must do even, if it's a long way from here. Hold on to

> your life, even if it's easier to let go. " - Pueblo Prayer