Hypophosphatasia-L Archives

Archiver > Hypophosphatasia > 2000-03 > 0953948544


From: Anne Shaw <>
Subject: Re: Fw: [Hypophosphatasia] Bone Scans
Date: Fri, 24 Mar 2000 17:42:24 -0800 (PST)


I couldn't have said it better myself, Marge. Life is
what we make it. I try to be thankful for what I have
and realize there is a purpose to all things. I know
it could be much worse.
Anne

--- Margery Callen <> wrote:
>
> Hi Anne:
>
> I agree with what you are saying -- it is a mystery
> why hypophosphatasia
> hits us all so differently -- why it is so difficult
> to be properly
> diagnosed and why this disease hits us at such
> different times in our lives!
> It is no wonder that the doctors are left so
> puzzled!
>
> It appears, as all of us are left to do, to carry on
> with our own research
> individually. We have to decide what is best for
> ourselves and what route
> we should follow. That is difficult. We can so
> easily be led down a wrong
> path, don't you think -- even by experts and
> certainly well-meaning people?
>
> The answer to all of this? As you say Anne -- go by
> our instincts. What is
> the the most comfortable situation for ourselves to
> be in. How do we want
> to spend the rest of our lives? Constantly seeing
> doctors or riding with
> it. I have now chosen the latter.
>
> Marge
>
>
> -----Original Message-----
> From: Anne Shaw <>
> To:
> <>
> Date: Friday, March 24, 2000 11:11 AM
> Subject: Re: [Hypophosphatasia] Bone Scans
>
>
> >Hi everyone,
> >I too have been following the discussion. I find
> that
> >no two of us have the symptoms. I will share a bit
> of
> >my history, primarily for Brenda and Richard, but
> you
> >all get to hear it again.
> >I have had issues since a child. I was told leg
> pain
> >was growing pains. Told more than once that I had
> a
> >screw loose. I even had an orthopedic md tell me
> to
> >go home, sleep with my husband and keep my mouth
> shut,
> >that there was nothing wrong with me. Needless to
> >say, I did not pay his bill. In 1988, I was a
> nurse
> >in a local clinic and my family doc had me see an
> >internist who researched all of my history. At
> this
> >time, I started getting multiple rib fractures that
> >didn't heal well. (Over the years, I have broken
> ribs,
> >vertebrae, anlke, wrist, toes, fingers) He finally
> got
> >in touch with a doctor at the Mayo clinic who told
> him
> >what tests to do. My blood work showed the results
> of
> >hypo so she had him do a 24 hour urine which showed
> >hypo. I then was sent to the Mayo to see her. She
> >confirmed hypo and also did a bone biopsy it also
> >confirmed hypo. I saw Dr. Whyte in 1995, I did not
> >care for him. He said if I have hypo it is mild
> and
> >that my symptoms are too severe for hypo. He
> thought
> >it was something else but didn't know what although
> he
> >suggested Cushings disease. That was later ruled
> out.
> > My specialist at Mayo still confirms hypo. Dr.
> Whyte
> >did a bone biopsy but never sent results to me. I
> >think he is excellent with the children who seem to
> >run more true to form with the disease but adults
> are
> >a bit of an anomoly to him. I still have
> >fractures.....and my doctors all comment on how
> >difficult this is. I am a challenge they say. I
> also
> >have narcolepsy and sleep apnea. Primarily we
> treat
> >the symptoms and go from there. I recently had a
> bone
> >scan due to increased pain in the legs. I had it
> done
> >at a new place and the radiologist didn't know what
> he
> >was doing in regards to this disease. He did
> comment
> >on hot spots in the feet, ankles, right shoulder
> and
> >jaw. I asked him to comment on old and healing
> >fractures and he did not.
> >At present, I take meds for pain, reflux,
> narcolepsy
> >and treat other things as they present. I use a
> cane
> >once in a while, I am starting to have trouble
> >walking. I feel like I am loosing strength in the
> >legs.
> >I guess, Brenda, I would say don't give up.....we
> are
> >all so different. Listen to yourselves and follow
> >your hearts and instincts. God bless.
> >Sorry, I am rambling and writing as I am thinking
> so I
> >know this is a mess. Thanks for listening.
>
> >Anne Shaw
>
>
>

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