Hypophosphatasia-L Archives

Archiver > Hypophosphatasia > 1998-08 > 0903719656


From: "Carol Clapshaw" <>
Subject: [Hypophosphatasia-L] Resend of Dana's first letter
Date: Fri, 21 Aug 1998 10:14:16 -0700


Hi Everybody,

I don't think Dana's first letter got circulated to the list so I am
resending it.

Welcome to the list, Dana

Carol

Hi Everyone!

I am still actually waiting to find out if I have hypophophatasia. One
year ago I was diagnosed with chondrocalcinosis. Since then I have been to
13 doctors and gone through many tests. I was diagnosed with iron overload.
Then I went to mayo clinic in Jacksonville and they said that I don't have
Iron overload and they are checking me for hypophosphatasia. My alkaline
phosphatase is one third of the lowest normal. It's been 2 months since I
went to Mayo and still don't have the results. The rhumatologist there is
going to do more research when he gets to Rodchester Mayo. Besides having
chondrocalcinosis I have arthritis and a fractured vertebrae (I don't know
when I fractured it.) It when it was discovered when I went to a
chiropractor for severe headaches. I have had these headaches for 7 months
and no one can figure out what is causing them. Does hypophosphatasia cause
headaches? I also have a benign appearing lucent lesion on my left femoral
neck. I wonder if this causes headaches. I am in pain most of the time. I
have to take tylenol 4 for the headaches. Mayo told me to quit caffeine and
that doesn't help. The only thing I take for the knee, wrist and beck pain
is ibuprofen.
Can anyone till me what tests were ran to diagnose them with
Hypophosphatasia? (Even Mayo is having trouble). Any info would be great!
Thanks,
Dana

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