to J.J.

[Guest guest]

J.J. wrote:

My appointment went well. I am a little skeptical about his

diagnosis---gastroparesis. I'm not sure I buy it.

if I do have CP I won't find out anytime soon. This is why I am

skeptical: He said he was not concerned with my elevated

amylase and that he doesn't even look at lipase until it's 1000.

He said, " I know your symptoms are a lot like CP but I don't think

you have it. " He put me on a gastroparesis drug and said he will

not rule out CP---so I have to go with that for now.

Has anyone ever had a similar experience?

Dear J. J.,

All I can say about this specialist's lackadasial attitude about

elevated amylase and lipase levels is that I'm certainly glad he

wasn't the doctor on duty when I went to the hospital the first time

with my first acute pancreatitis attack!!! Yikes! My lipase was

only 860, yet I was in the midst of an acute attack and at the time

had multiple pseudocysts in my pancreas. In fact, I've never had

A & L levels higher than that first time.

Sorry to be critical, but I am. I'll get over it....(smile). You must

remember, though, that that's just my personal opinion and I

have no medical training, just personal experiences of medically

diagnosed and confirmed chronic pancreatitis, pseudocysts,

pancreas burnout, brittle diabetes type 1, malabsorption,

osteopenia from the malabsorption and hypothryoid....all which

has happened within the last two a half years.

But this is a start, and this doctor has set you up with medication

for what he believes is your problem. If it's gastroparisis, then

the medication should work and you should know whether this is

a valid diagnosis of your problems within a few weeks. If the

medication brings no relief, then you do have that follow-up

appointment in a month, and the chance of a repeat EUS. Even

though the proposed diagnosis isn't what you expected, now you

have your foot in the door of a specialist, and that's a good place

to be.

One thing I would suggest that might really help would be a daily

diary, starting now, of all your activities, symptoms, good days,

bad days, etc. Keep track of what you eat and how you feel

afterward. Eat as you normally would, and keep track of any

adverse reactions you may or may not have to high fat foods. Try

to find out by your personal activities and eating habits if there's

anything you can pinpoint that triggers any discomfort. If you do

have discomfort , aches or pains or unusual bowels, keep track

of that, too. Where and when and so forth. You may learn some

valuable information by doing this that would not only help you,

but would also help your physician to reach a clear

understanding of what's going on.

It would be absolutely wonderful if it wasn't CP. Gastroparesis

can be controlled far more effectively and easier than

pancreatitis can. As far as whether or not you " belong here " ,

that's up to you, but I don't see any reason why you couldn't hang

around for a while and listen, ask and learn, anyway. We're

really not a bad bunch of people (smile).......and if you find out in

the next month or so that CP isn't something you're going to be

living with, then we'll ALL be delighted, and happily give you a

fond farewell!!

BTW, for many of our members, it took months to years to finally

get their diagnosis'. This isn't a well understood disease, and

even the specialist's are often stumped. There are only a few of

us that have been " lucky " (if you can call it that) enough to get an

early diagnosis.

So why don't you stick around for a while and see how things

go?

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for consultation with a medical

professional.