Re: Plea for help with diagnosis

From: Brad Edwards (bradedwards_at_emailaccount.com)
Date: 06/09/04 

Date: 8 Jun 2004 17:52:29 -0700

pfriley@watt-not.com (PF Riley) wrote in message news:<40c5479b.112332087@news1.nwlink.com>...
> On 7 Jun 2004 15:44:18 -0700, bradedwards@emailaccount.com (Brad
> Edwards) wrote:
> >
> How high were the BUN and creatinine?
>

I'm not sure since I don't have the reference numbers for this
particular test. I'll have to get a hold of them.

> There most certainly are plenty of treatments for Crohn's disease. You
> may have read there is no CURE, but there is certainly treatment.

You're correct, I should've said cure.

> Hmm... intermittent, nonspecific symptoms related primarily to the
> gastrointestinal tract, abdominal pain, low weight, extraintestinal
> manifestations. No response to a gluten-free diet. Sure sounds like
> Crohn's disease to me.
>

> My guess is that you're right: It IS something involving the immune
> system, namely, Crohn's disease.
>

I'll admit your words scare me a bit. It's not a disease I'd wish to
have. :)

>
> Three words of advice: Get the colonoscopy.

I will strongly consider it if I can find someone who will do the
procedure without sedation.

I was hoping that some deductive reasoning could be done based on the
facts that I already have. First I need to know what are the
possibilities? The doctors I saw thought of thyroid problems, IBS, IBD
or Celiac Disease. But I wonder what else it might be?

If those are my only choices then it should be fairly easy to narrow
it down a bit. Gene testing would virtually eliminate Celiac Disease
as a candidate if I don't have the common gene. That leaves IBS or
IBD.

I've looked at the IBD treatments, and I don't think I'd use any of
the medications, or surgery. So that pretty much just leaves things
like diet, and experimental approaches such as the ingestion of
helminthic worm eggs. So it seems to me that if no one can offer me
any other ideas, and Celiac Disease didn't seem to make complete
sense, then I should narrow in on IBD. I should change my lifestyle
based on the advice of those who have lived with it for years, and
modify my diet a bit. I could also use the worm approach once it
becomes publically available, and if I show improvement then
everything should be okay.

I've spent the past 4 years inside my house trying to manage my
mystery illness and avoid the terrible days. I might not be cured, but
whatever I'm doing has made me much better than when it first
appeared. It is not easy for me to get to the doctors, and when I do
go there they look at me and say, "What do you want me to do?". The
colonoscopy will be a traumatic experience. If it is so difficult to
just go there and visit with the doctor, and have blood drawn, then it
will be a huge ordeal to prepare for the procedure.

When I weigh my options, and I see that even if they told me, "Yes,
you have Crohn's", it still wouldn't change that much that I can see.
There is no cure, and I don't take medications, so basically it would
just come in handy if I were to become seriously ill and had to be
hospitalized. Then they would at least know what I had. But I've
managed to survive this long, so it feels like a more secure decision
to just refine my management and keep trying to find a way to get
better.

If people could help me with the list of possible causes then I could
go through each one and eventually narrow it down. That would minimize
the amount of testing required to find the solution, and it would be
much easier than having to keep visiting the hospital.

Thanks

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