Diagnosis

[Guest guest]

My daughter is 2 1/2 years old and her biopsy showed a high amount of

eosinophils in the stomach. The gastroenterologist never mentioned

eosinophilic gastroenteritis as part of the diagnosis. How would I know for

sure that this may be part of the problem?

She is currently doing really well on Pepcid, Propulsid and a

non-dairy/reflux diet. She is still in the trial stages of the non-dairy

diet (week 3) so it is hard to tell if she has milk allergies just yet.

Thanks so much.

[Guest guest]

HI, our GI doc figured out our 2-1/2 year old had eosinophilic

gastroenteritis August 97 but only confirmed it when we asked him in

December 97 after our ped suggested we ask about it. Ask if he has

considered it?

Dawn

----------

>

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] Diagnosis

> Date: Wednesday, June 03, 1998 7:46 AM

>

>

>

> My daughter is 2 1/2 years old and her biopsy showed a high amount of

> eosinophils in the stomach. The gastroenterologist never mentioned

> eosinophilic gastroenteritis as part of the diagnosis. How would I know

for

> sure that this may be part of the problem?

> She is currently doing really well on Pepcid, Propulsid and a

> non-dairy/reflux diet. She is still in the trial stages of the non-dairy

> diet (week 3) so it is hard to tell if she has milk allergies just yet.

> Thanks so much.

>

>

>

>

>

----------------------------------------------------------------------------

-

>

[Guest guest]

In a message dated 98-06-03 08:44:52 EDT, you write:

<< he gastroenterologist never mentioned

eosinophilic gastroenteritis as part of the diagnosis. How would I know for

sure that this may be part of the problem? >>

:

Unfortunatley not all GIs are aware of the correlation between a high

eosinophil count in the stomach/esphagus and allergies, etc. Ask your doc

about it. Often the no dairy and reflux diet helps kids.

Sharon

[Guest guest]

Dear Voice members,

Yesterday the results of the brain biopsy on my friend Judy finally came

in. Only one lab in the Pacific Northwest would do the test so the tissue had

to be sent to Washington. The diagnosis is Creutzfeldt-s disease. The

doctor has given Judy weeks or months to live. she is now on an IV for

fluids. I thought she was 48 but she is only 45 years old.

No one knows how she got it. She did travel to Japan to deliver a paper

early in the 1990s. Also there is the death of her grandmother of

" alztheimers " in late 1980s. Both her parents are alive and around 65-70

years old. She has a brother and a sister.

For the last five years Judy was involved in many vegetable and flower

garden plantings and may have used alot of bone meal. I doubt she took

supplements. She did eat beef. She was born in New Orleans but lived the last

20+ years here in Eugene, Oregon.

When I talked to her housemate last night I asked if Judy had any

strange symptoms last summer. said the only thing she noticed was

Judy talked alot about insomnia. had insomnia too but it went away

and she attributed it to menopausal hormonal changes. Judy's insomnia did not

go away. Then the other symptoms, falling, vision problems, forgetfulness

began to gradually appear.

That's all I know.

I've never known of any other CJD victims in Oregon. However my

naturpath suspects that she may have a client who possibly has CJ as tests

don't show any reason for his parkensonian tremors on one side. Another

person told me that her mother suffered tremors and fell often. This was in

the late 60's, early seventies. After her mother died she had the brain

autopsied because she wanted to know the reason for her mothers strange

problems. They didn't find anything. I wonder if CJ was recognizable then.

She seemed to think her mothers symptoms went on for several years which is

unusual but not impossible for CJ. Ballenchine suffered from his

symptoms for five years. He was incredibly sensitive to his body, being a

dancer and noticed minute changes in his body. (Inability to do a piroette

from the left but not the right leg was his first red flag.) Very fit and

disciplined he may have had an edge or noticed changes earlier.

It's a sad day, even though I did feel certain myself that poor Judy had

this disease. To hear the final diagnosis and see the pain and sorrow of the

family and community is freshly painful. I have read everything I can on this

site and others. I feel tired.

I ran off a sheaf of material and gave it to my chiropractor. There is

another packet ready for my naturpath and the psychologist whose mother had

the strange symptoms. I'm just going to rest today.

I feel so sad for all the sufferers and for the cows too, that we humans

put them through this by feeding them things they would never have eaten

themselves. I have horses and I can attest they are intelligent, feeling

beings, as must also be the cows. I used to enjoy the sight of the peaceful

cows grazing in their green pastures, with their sleepy eyes and little

calves bouncing playfully around them in the Spring. Now it is not the same.

I hope and pray we find the cause and cure for this disease.

, Oregon

[Guest guest]

:

I am so very sorry about your friend, Judy. I know how hard this is for you

and her friends and family. Please know that we are here for you and please

let Judy's family know that we are here for them as well. Hopefully, someday

we will understand more about this disease and prevent someone else's family

from so much pain and grief.

Beverly G.

[Guest guest]

Dear Beverly,

Thank you for your kind thoughts. I am going to give this site to Judy's

family and roomate. I couldn't earlier because they didn't want to believe it

could be CJD. I think it is going to take them some time to absorb this.

three weeks ago they had never even heard of CJD. Everything progressed so

quickly. I am glad they did get a diagnosis because it is so hard to search

and search trying to discover what is wrong. Her family, being from out of

town remembered her healthy and came and found her in advanced stages of CJD.

So that is alot for them.

[Guest guest]

:

The worst thing about my dad's death from CJD was the speed in which it

attacked him. He was gone 5 weeks after his first apparent symptom. I know

that Judy's family is going to feel overwhelmed and helpless. The best

advice I can give after having gone through this nightmare is to spend as

much time with Judy as possible now, because tomorrow may be too late. I am

not sure if she is still communicating, but her friends and family need to

spend time with her now, because she will most likely become unresponsive

very soon.

I am so sorry. Please let me know if there is anything I can do.

Beverly G.

[Guest guest]

,

I am so sorry to hear the result of your friend Judy's brain biopsy was

indeed CJD. I lost my mother to this on Dec. 10, 98 after 46 days from the

onset of symptoms to her death so I know what you are experiencing. If you

need anything please remember we are here for you.

God Bless.

Suzanne

Re: Diagnosis

>From: Windmnt@...

>

>Dear Voice members,

> Yesterday the results of the brain biopsy on my friend Judy finally

came

>in. Only one lab in the Pacific Northwest would do the test so the tissue

had

>to be sent to Washington. The diagnosis is Creutzfeldt-s disease. The

>doctor has given Judy weeks or months to live. she is now on an IV for

>fluids. I thought she was 48 but she is only 45 years old.

> No one knows how she got it. She did travel to Japan to deliver a

paper

>early in the 1990s. Also there is the death of her grandmother of

> " alztheimers " in late 1980s. Both her parents are alive and around 65-70

>years old. She has a brother and a sister.

> For the last five years Judy was involved in many vegetable and

flower

>garden plantings and may have used alot of bone meal. I doubt she took

>supplements. She did eat beef. She was born in New Orleans but lived the

last

>20+ years here in Eugene, Oregon.

> When I talked to her housemate last night I asked if Judy had any

>strange symptoms last summer. said the only thing she noticed was

>Judy talked alot about insomnia. had insomnia too but it went

away

>and she attributed it to menopausal hormonal changes. Judy's insomnia did

not

>go away. Then the other symptoms, falling, vision problems, forgetfulness

>began to gradually appear.

> That's all I know.

> I've never known of any other CJD victims in Oregon. However my

>naturpath suspects that she may have a client who possibly has CJ as tests

>don't show any reason for his parkensonian tremors on one side. Another

>person told me that her mother suffered tremors and fell often. This was in

>the late 60's, early seventies. After her mother died she had the brain

>autopsied because she wanted to know the reason for her mothers strange

>problems. They didn't find anything. I wonder if CJ was recognizable then.

>She seemed to think her mothers symptoms went on for several years which is

>unusual but not impossible for CJ. Ballenchine suffered from his

>symptoms for five years. He was incredibly sensitive to his body, being a

>dancer and noticed minute changes in his body. (Inability to do a piroette

>from the left but not the right leg was his first red flag.) Very fit and

>disciplined he may have had an edge or noticed changes earlier.

> It's a sad day, even though I did feel certain myself that poor Judy

had

>this disease. To hear the final diagnosis and see the pain and sorrow of

the

>family and community is freshly painful. I have read everything I can on

this

>site and others. I feel tired.

> I ran off a sheaf of material and gave it to my chiropractor. There

is

>another packet ready for my naturpath and the psychologist whose mother had

>the strange symptoms. I'm just going to rest today.

> I feel so sad for all the sufferers and for the cows too, that we

humans

>put them through this by feeding them things they would never have eaten

>themselves. I have horses and I can attest they are intelligent, feeling

>beings, as must also be the cows. I used to enjoy the sight of the peaceful

>cows grazing in their green pastures, with their sleepy eyes and little

>calves bouncing playfully around them in the Spring. Now it is not the

same.

> I hope and pray we find the cause and cure for this disease.

> , Oregon

>

>------------------------------------------------------------------------

>Start a new hobby. Meet a new friend.

>http://www.ONElist.com

>ONElist: The leading provider of free e-mail list services!

>------------------------------------------------------------------------

>If you have any questions, problems, concerns, etc... please contact Liz at

LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or

Beverly G at Bevalso@....

>

[Guest guest]

In a message dated 4/9/99 1:26:43 PM Central Daylight Time, Windmnt@...

writes:

<< She was born in New Orleans but lived the last

20+ years here in Eugene, Oregon. >>

Hello ,

I'm sorry to hear that your friend's diagnosis is definitely CJD.

Just wanted to let you know that my mother-in-law, who died of CJD in 1973,

was born and raised (and died in New Orleans). She was only 49 when her

symptoms became obvious, and 50 when she died. I don't suppose there is any

connection, but I thought you might want to know. Feel free to contact me if

you like.

With sympathy,

Yvette

[Guest guest]

I am truly sorry for your Friend Judy. As others have said this is such a

tragedy and the pain we feel no one can understnad until you actually go through

it. My thoughts and prayers are with you, Judy, her family and many of her

friends. The next days, weeks and months will be difficult for all those

involved. Ask God to help you through this time. He will. And we will continue

to pray for you all.

As I watch my father go down hill, I know the sorrow that you have. We still do

not have a confirmed diagnosis, so we wait and watch. Contiue to be Judy's

friend. Love her and cherish the time you have left together. It will mean a lot

to you and her.

Kathy

[Guest guest]

Hi Chrisitne:

As all have said before me, we do understand what your friend, Judy and

her family are goig through..My husbands death was fast. He had

advanced symptoms the latter part of Oct. was back in the hospital in 3

weeks after dischage It was then that a wonderful young doctor who was

familiar with CJD did all the right tests and diagnosed CJD. In 10 days

everything that she said would happen did happen. He died peacefully in

a coma, which he had been in for 4 days.

The HOPE that Judy has is to be ready with God for when the time comes.

That is what has kept most of us though it all. You and the others are

in our prayers daily. Please keep in touch and let us know what youneed

prayer for.

And remember YOU ARE ALL LOVED.

Be blessed,

Betty

[Guest guest]

Kathy,

Hello my name is Becky, we have been on the support group along while my dad

has cjd, he has been sick for 2 1/2 years his was very rapid. My dad did not

have the 14-3-3 test done because we did not want to put him through any

more than what he had to go through, he has had the monoclinic jerks, the

seizures(grand-mal) , hallucinations

now his state of mind is gone he can no longer talk, walk, sit up in the

bed, has trouble swallowing liquids, most of his foods are liquids. He keeps

his legs and arms curled up under him he is getting worse as the days go by,

we are still taking care of him at home. It is so devastating to see him go

through life like this, any body for that matter. I really hope one day they

can find out just where it came from.May God bless you and your family.

Becky

----Original Message-----

To: cjdvoice (AT) onelist (DOT) com cjdvoice (AT) onelist (DOT) com>

Date: Monday, April 12, 1999 1:53 PM

Subject: Re: Diagnosis

>From: martink@...

>

>

>

>,

>Well I heard from Dr. Gibbs today. The 14-3-3 was negative. But I still

believe

>we dealing with CJD. The demetia is worse. The myoclonus movements are

worse. He

>even didn't recognize my mom and sister Yesterday. It is such a difficult

ordeal

>to go through. I was alomost wishing for a positive results, just so we

would

>know what we had to go through...but no it had to be negative and we are

still

>looking. They are planning to continue to do serial EEG's and MRI's and

most

>likely repeat the Spinal in a month. For now all we can do is wait, treat

the

>symptoms and wait. The waiting is the worse part. Hopefully soon something

will

>show and say " this is it or it isn't "

>

>My prayers are with each and everyone on this so special list. Without you,

I

>don't know what I would do.

>God BLess each of you.

>

>Kathy

>

>

>

>------------------------------------------------------------------------

>Looking for a new hobby? Want to make a new friend?

>http://www.ONElist.com

>Come join one of the 115,000 e-mail communities at ONElist!

>------------------------------------------------------------------------

>If you have any questions, problems, concerns, etc... please contact Liz at

LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or

Beverly G at Bevalso@....

>

[Guest guest]

Dear Kathy,

Thank you for your kind thoughts. I am praying for your dad and everyone

on this list every day. I am very grateful that there are people I can talk

to. THis list is so kind.I hope that your dad will be diagnosed with

something else and your family will be spared this. I have been finding

lately that there is a spiritual gift in every experience even though at the

time it seems terribly dark.

, Oregon

[Guest guest]

Kathy:

I'm so sorry for the frustration you are feeling. I can only imagine.

Just know we are all here for you and we are praying for you and your Dad.

What do the neurologists say about the 14-3-3 results? Are they still

considering it CJD?

Take care.

Liz

[Guest guest]

Dear Kathy,

I'm glad your dad's results were negative. Let's hope it is something

that can be healed. I continue praying for you. It's so hard not to know what

is wrong.

[Guest guest]

Kathy,

So sorry that you didn't get a definite answer. That is what is so

frustrating about this disease. The tests keep coming back negative but the

symptoms keep going on. Unfortunatly they sound like the typical way that

CJD acts. I knew in my heart that is what we were dealing with in my Moms

case. After getting the information it was the only thing that actually hit

the nail on the head. You are in my prayers.

Robin

[Guest guest]

Kathy:

I am so sorry that you still don't have a diagnosis for your dad. I read

your posting and it sounds like to me that you feel exactly as I did two

years ago -- my dad's spinal tests came back negative, but in absence of any

other diagnosis, I still believed he had CJD. My dad died without a firm

diagnosis so we agreed to an autopsy. It was definitely CJD. I don't know

what makes some spinal tests come back negative or " inconclusive " . If I were

you, I would ask that he be tested again in a few weeks. Please keep us

posted.

Beverly G.

[Guest guest]

,

Well I heard from Dr. Gibbs today. The 14-3-3 was negative. But I still believe

we dealing with CJD. The demetia is worse. The myoclonus movements are worse. He

even didn't recognize my mom and sister Yesterday. It is such a difficult ordeal

to go through. I was alomost wishing for a positive results, just so we would

know what we had to go through...but no it had to be negative and we are still

looking. They are planning to continue to do serial EEG's and MRI's and most

likely repeat the Spinal in a month. For now all we can do is wait, treat the

symptoms and wait. The waiting is the worse part. Hopefully soon something will

show and say " this is it or it isn't "

My prayers are with each and everyone on this so special list. Without you, I

don't know what I would do.

God BLess each of you.

Kathy

[Guest guest]

Liz,

I spoke with Dr. Duntley this morning. before calling Dr. Gibbs. and we talked

about the increased dementia and few other problems. And yes he is still

considering CJD. But I am wonderinga bout nvCJD. In nvCJD it says

" This is characterised clinically by a progressive neuropsychiatric disorder

leading to ataxia, dementia and

> myoclonus (or chorea) without the typical EEG appearance of CJD. "

But it doesn't talk about the behavior changes, personality changes..but dads

eeg remains normal. But Dr.Gibbs did tell me that in over 40% of the cases the

EEG never shows anything. So I assume Dr. Duntley's plan is to continue with

Serial EEG's and MRI's and a few spinal here and there.

Thank you for your support.

Kathy

[Guest guest]

, I wish could as optimistic as you. I truly feel dad had CJD. All his

symptoms point to that direction. I think that we are not far enough along in

disease process for the 14-3-3 to appear. My confusion in all of this is how dad

already has myoclonus and seizures. These two symptoms tend to be seen a little

later in CJD. But we never been one to have the perfect symptoms. The symptoms

listed on the Voice web page...dad has just about all of them. Except he is

still able to talk.

He has had and has insomnia, confusion, depression early on. personality and

behavioral changes. a rapid progessive dementia This started at Christmas. and

over the past week has really gotten bad. He at times doesn't recognize family

members. He has myoclonus, and seizures. He has muscle weakness in the legs Left

greater than right. He walks to the right and his gait at times is unsteady.

These are all sypmotons of this horrible disease. So is it something else...No I

don't think so. I just don't think it is showing up yet. Because everyother

disease process they have looked at...all the test have been negative and they

have been ruled out.

Thanks for listening and thans for the prayers.

Kathy

[Guest guest]

Hi Becky,

Well it sounds like my dad has half of what yo are having right now, " monoclinic

jerks, the

seizures(grand-mal) , hallucinations now his state of mind is gone " When the

myoclonic jerks happen in the trunk of the body, he does have trouble

swallowing. But other than that he has only choked once. Yes this disease is is

so damn frustrating. I have spoken to your mom several times about your father.

Because we are experiencing about the same course right now. My prayers are with

you and your family, because we are in this together.

Take Care, God Bless,

Kathy

" Frances Moon " fireplug51@...> on 04/12/99 02:23:38 AM

Please respond to cjdvoice (AT) onelist (DOT) com

To: cjdvoice (AT) onelist (DOT) com

cc: (bcc: Kathy RN/Anesthesiology/Washington

University)

Subject: Re: Diagnosis

Kathy,

Hello my name is Becky, we have been on the support group along while my dad

has cjd, he has been sick for 2 1/2 years his was very rapid. My dad did not

have the 14-3-3 test done because we did not want to put him through any

more than what he had to go through, he has had the monoclinic jerks, the

seizures(grand-mal) , hallucinations

now his state of mind is gone he can no longer talk, walk, sit up in the

bed, has trouble swallowing liquids, most of his foods are liquids. He keeps

his legs and arms curled up under him he is getting worse as the days go by,

we are still taking care of him at home. It is so devastating to see him go

through life like this, any body for that matter. I really hope one day they

can find out just where it came from.May God bless you and your family.

Becky

----Original Message-----

To: cjdvoice (AT) onelist (DOT) com cjdvoice (AT) onelist (DOT) com>

Date: Monday, April 12, 1999 1:53 PM

Subject: Re: Diagnosis

>From: martink@...

>

>

>

>,

>Well I heard from Dr. Gibbs today. The 14-3-3 was negative. But I still

believe

>we dealing with CJD. The demetia is worse. The myoclonus movements are

worse. He

>even didn't recognize my mom and sister Yesterday. It is such a difficult

ordeal

>to go through. I was alomost wishing for a positive results, just so we

would

>know what we had to go through...but no it had to be negative and we are

still

>looking. They are planning to continue to do serial EEG's and MRI's and

most

>likely repeat the Spinal in a month. For now all we can do is wait, treat

the

>symptoms and wait. The waiting is the worse part. Hopefully soon something

will

>show and say " this is it or it isn't "

>

>My prayers are with each and everyone on this so special list. Without you,

I

>don't know what I would do.

>God BLess each of you.

>

>Kathy

>

>

>

>------------------------------------------------------------------------

>Looking for a new hobby? Want to make a new friend?

>http://www.ONElist.com

>Come join one of the 115,000 e-mail communities at ONElist!

>------------------------------------------------------------------------

>If you have any questions, problems, concerns, etc... please contact Liz at

LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or

Beverly G at Bevalso@....

>

------------------------------------------------------------------------

[Guest guest]

Hi Kathy

Sorry about the diagnosis. My husbands MRI, showd brain shrinkage,

The spinal fluid showed negative as well as other tests. But the EEG

showed plenty. His doctor told me that she wasn't surprised with the

results. She said that this was very common with CJD and she had known

of negative results until the final stages.

So don't give up hang in there and I agree with " run the tests again " .

And again, until the answer comes.

Keep looking up! You can make it! The joy of the Lord is your

strength.

Love you,

Betty

[Guest guest]

Kathy -

Just to let you know you are in my thoughts and prayers. I lost my dear

sweet Dad just 10 months ago and know the difficult times you and your

family are experiencing. I, too, pray and hope that your father doesn't

have CJD. But either way, we are all pulling for you and we're here

anytime you need us.

Shar

[Guest guest]

Shar,Thank you for your kind words. I'm sure each of you know just how wonderful

the support you get from the blessed group helps. You have been my life line.

Thank you for that. Even though Dad's 14-3-3 is negative this first time, I feel

in my heart he has CJD. The symptoms are all there. His CSF protien was within

the normal range, so I knew the 14-3-3 would not come back negative. I hope Dr.

Gibbs is keeping track of the protein level and the corrolation of neg or pos.

14-3-3 when the protein is normal or elevated. I think I will probably ask him

about this.

Our plan is to continue to do serial EEG's and MRI's only repeated the spinal at

a later date. I will keep you posted.

Kathy

[Guest guest]

Kelli,

Welcome back to the group. I have learned a lot about mito here, not

only from asking questions, but also listening to everyone share about

the different symptoms, tests, doctors' appointments etc. that their kids

have. I hope you can find the information you are looking for.

Do you know about the mitochondrial disease chats on www.mdausa.org every

Monday at 9 p.m. Eastern? Besides the regular weekly chats, there is a

guest speaker about once a month. Past speakers have included some of

the leading mito doctors, such as Dr. Boles and Dr. Bruce Cohen

(transcripts of those are available on the site). If you have the

opportunity to drop by when a guest speaker is there, perhaps you could

ask a question and get a different perspective on 's

situation. (A list of upcoming guests is posted on this group about once

a week; I believe the next is Dr. Boles January 26.)

Although there is still much unknown about mito, I think the information

is better than when your daughter was diagnosed. Maybe Dr. Shoffner

could shed more light on her situation simply because of the passage of

time?

Best of luck,

-- Mom to:

Emilie (17), mito--complex IV, cp, ld

Kaitlin (17), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold