Normal blood tests

[Guest guest]

I know this topic has been addressed before, but please be patient

with me. I've been reading the messages and first want to thank Heidi

for the latest URL with a complete summary of pancreatitis. I plan to

print it out and add it to my notebook. I also want to ask Heidi -

How are you doing? I know you've been busy with many appointments

since your recent hospitalization. Have you had a chance to catch

your breath, assimilate what's happened to you and come to terms with

it? My very best wishes to you along with thanks for all the help and

information you've shared.

A message to Bert: What's the latest? Is your wife recovering

speedily? I know you had to put your TP/ICT on hold; have you been

able to reschedule?

To Karyn and others who've put very personal emotional stuff out

there, baring your thoughts and feelings, and made me think, feel,

cry, and want to hug you and make it better... Having this message

board has really been a lifesaver for me. Thank you.

I haven't answered/replied to many, many posts I've read and

appreciated. Just haven't been up to it lately (like Kimber - so glad

you're doing better) but I do keep you all in my thoughts and prayers.

While it is early evening here in Hawaii, it's probably the middle of

the night for most of you, so I wish you pleasant dreams.

Now, for my problem: I was diagnosed with AP when I went to the

emergency room Sept. 2001. No cause ever determined. Constant

pain/pressure ever since, with just a few flare-ups in the past year

and a half. My current physician wanted to document what I consider a

flare-up, so last week when the pain was very bad, I dragged myself to

the lab for blood work. Results - perfectly normal.

Now I've read that amylase and lipase levels will no longer be

elevated in chronic pancreatitis, but I thought that was a later

stage? It has been, as I said, 1 1/2 years since my very first AP.

My physician has not even diagnosed CP.

Any suggestions? Any other tests that will convince my doctor that

I'm not a complete fraud? I've kept a food/symptom diary ever since I

got out of the hospital and know when I've had a flare-up or when I'm

doing OK. But that isn't " substantiated " by lab results. I had 2

CTs, one in the hospital in Sept. 2001 and another 6 weeks later to

make sure no pseudocysts. Since then, I've had an MRCP just last

November. Nothing out of the ordinary. All in my mind? Obviously

not, when pancreatic enzyme supplementation is required for digestion.

Without taking enzymes, I can't eat anything except fruit or

vegetables without pain. Any protein or fat causes immediate problems

if I don't take the enzymes. This is so frustrating!

Sorry for the long message. When I haven't posted in a while, I just

have so much saved up. With warm aloha to all,

Chris

[Guest guest]

Chris

Sit back and ask youself how long you really have been sick. Cassie only

started having " PAIN " in October of 2000. Prior to that she had plenty of

symptoms but it was always put off to something else. Oh thats the result of

antibiotic, oh food allergies, she's got the flu and my all time favorite "

nervous stomach " . Even when she had her 1st accute attack requiring

hositalization it was though to be something else she had emergency surgery.

Only when the surgeon got inside and discovered that her appendex was ok but

she did have sores where pancreatic juices where working on it. Pancreatitis

was diagnosed only after he saw the damn thing.

We were baffled about the whole thing. Karyn was the one who made

me go back and think with her. She was sick, had signs almost all her life

so that now by age 13 her levels are normal even low even though she has

daily pain. I have gotten all her Dr's to agree now that this has been going

one for 13 years. Her GI's do admitt that her levels can be normal and yet

she has signs of having and attack but her PCP does not. No elevated levels

no pain treatment. the other thing is with Cassie- have had her to Dr's in

AM with pain levels normal sent on out way 6 hrs later she's screaming on the

top of her lungs, digging at me begging for pain releif and both amylase and

lipase well over 2000. We (Cassie, my husband and me) have found its best to

trust our own instincts. I don't care, if she doesn't look right, or act

right she stays home. If we feel she need to be seen we make sure she's

seen. I really don't care what the Dr's say she is her own best judge of how

she feels. Keep that in mind. IMHO no-one can tell you how you really feel.

Follow your bodies signals it know when things are not right.

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

I just wanted you to know that, before I was diagnosed with

chronic, but was listed as idiopathic reoccurant

pancreatitis, I had a number of flare-ups that I was sure I

had a case of pancreatitis, my enzyme levels came back as

normal (wasn't aware that you could have cases without

raised enzymes at that time). Why this occurred I'm not sure

and this is purely speculation on my part, but it might be a

sign that the damage is bad and that this is the progression

of the disease leading towards chronic pancreatitis, and so

that the pancreas is producing enzymes in fits and spurts.

Basically that the organ is still able to produce large

amounts of enzymes, but only in a sporadic fashion, kind of

like the " honeymoon " period in Diabetes (where you are still

able to produce some insulin, but only in a sporadic

fashion). I'd discuss this with your doctor and see what he

thinks.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.