...for person who is suffering with presumed auto-immune central
nervous system symptoms.
Our 20 year old daughter, Kristen, has been tentatively diagnosed with
auto-immune disease of the central nervous system of unknown
cause.
Kristen was a very healthy wilderness instructor in Colorado and
in North
Carolina during the summer of '96 before she became acutely ill.
Her
symptoms, since October 1996, include extreme nausea severely
weakened
and uncoordinated limb and trunk muscles, widespread numbness,
slow and
slurred speech, and double vision. She is unable to sit up or
stand.
The auto-immune diagnosis is by elimination because she has tested
negative to every test thought of by the Walnut Creek Kaiser and
UCSF
neurologists and infectious disease specialists. After numerous
NM's, spinal
taps, and a brain and muscle biopsy, we still do not know what she
has.
She has not responded to Prednisone, Cytoxan, Acyclovir, Rocefin,
or
immune-globulin.
Included in this site are discharge summaries from her two
hospitalizations at UCSF and the Pathology report. Also attached
is a
history of her activities and travels for the two years before she
got sick.
Kristen's neurologist is Dr. Engstrom at UCSF. She has also seen
Dr. Howser
there.
We are hoping to find a neurologist who has experience with
similar patients
or who is doing research in this area in order to find the cause
of the
disease and, obviously, an effective treatment.
Thank you for your consideration and help.
For more information please visit our website at
http://members.aol.com/edcarolyn or contact us at edcarolyn at aol.com.
Sincerely,
Ed and Carolyn Shepherd
