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Dear Listmates,

I was diagnosed with CD 22 years ago and I am completely (as far as I can
tell) GF.

Three years ago I was diagnosed with severe osteoporosis, confirmed with two
Bone Density studies.  I have been on Rocaltrol, Miacalcin and Premarin to
help my bones.  I also am not taking Neurontin and SloMag.  I have checked
the archives and the Net (which scared the heck out of me)- suggesting that
spinal surgery (laminectomy) was the only treatment for the radiological
findings.  Since I am an optimist,  I thought I would toss this around to my
friends on the list and see what they could come up with from personal
experience.

In January I began having left shoulder pain, which I thought was bursitis.
To shorten the story, it wasn't and last week I was told I had an old (?)
tranverse nonunion fracture involving the base of the odontoid process.
"There is slight angulation indicative of old injury" (I don't remember any
except for a fall on my right side a year ago).  The radiologist went on to
say "there is grade II cervical spondylosis involving C4-C5 and C5-6. Also,
there is neural foraminal stenosis bilaterally worse on the left at C5-C6
and C-7."  He also call the fracture a "disturbing finding of a horizontal
radiolucency between the C1 and C2 interspace with no displacement of the
anterior tubercle at C1.

Now the real problem:  the  rheumatologist and orthopod are playing  bounce
the patient back and forth, probably because they have not had any celiac
patients.  When I mentioned the probability of an osteoporotic fracture or a
past diagnosis of osteomalacia, they looked at me as if I were coming from
Mars.  This was a signal to call my endocrinologist, who is 500 miles away
in Cleveland.  His advice was to seek out a neurologist/neurosurgeon at a
teaching hospital (Louisville, Ky. would be easier for me) immediately and
not to play around with this situation.  I am having numbness, tingling and
weakness in my arms and legs.  I am unable to lift more than five pounds and
I cannot raise my left arm over my head or behind my back.  My neck motion
is limited left to right.  I also have the crunching noise of arthritis and
a popping action in both shoulders, which I previously had interpreted as a
symptom of osteomalacia (a ricketey sound).  My stomach will not allow
NSaids or codeine for pain.  Taking NSaids with cytotech unleashes the nasty
prostaglandins and neutralizes  the benefits.  Sucrafate appears to have
gluten in it.   I did have a cortisone injection in my shoulder with no
benefit.

Now my question:  has anyone had similar diagnoses and did they require
spinal surgery?  Was physical therapy or medication helpful?  I am now
wearing a cervical collar and it seems to help, but any activity
re-activates my pain.  Can anyone recommend a neurologist who is familiar
with CD in Ky., Tn. or So. Il?

Thanks in advance and for all of the past help.
  RoseMary   [log in to unmask]