IUBio

HELP: DYING FROM UNKNOWN DISEASE

JOANNE M. OGBURN ogburn at ix.netcom.com
Thu Apr 10 20:56:18 EST 1997


In <3349EB3A.64EA at shom.fr> Thierry Pichevin <pichevin at shom.fr> writes: 
>
>HELP: J. IS DYING FROM UNKNOWN DISEASE
>
>J. is gradually dying from an unidentified disease. she is a woman, 57
year old, 
>and she has been ill for 14 months now. She has been in the hospital 
>during almost all this time, but nothing has been found. Her state is
worsening,
>it is an emergency. Following is a description of her disease. If
anyone
>can help (idea? people to contact? better newsgroup? etc...), 
>please send an e-mail, if possible mentioning your background.
>
>
>Dec. 95: first symptoms: fatigue, nausea
>
>Jan. 96: memory problems, difficulty to read, loss of balance, gradual

>weakening. Nothing in the scanner.
>
>Feb.-March. 96: a few hour coma on Feb., 2nd.  Hospitalization.
>Mid Feb.: tracheotomy. J. couldn't breathe by herself more than 30 mn
(0 today).
>respiratory assistance.
>Many exams: (scanner, mri, lumbar punctures, radiography, echography,
>brain biopsy, electromyogram, electro-encephalogram, evoked potential,
blood,
>fiberscope): no results regarding any viral or paraneoplastic origin.
>Anti HU antibody dosage slightly plus, then minus.
>Evidence of an encephalitis with lesions. Feeding by perfusion, and
oral
>from end of March.
>Communication: only by writing, more or less readable.
>
>Apr.-June 96: Transfer to another hospital. Gastric complication in
April and 
>May. No reeducation. Feeding by perfusion. More exams to control the
preceding 
>ones; no results. Back to oral feeding in June.
>Reeducation (arms and legs) in June and July. Difficulties to move
hands
> and fingers.  placing of protheses a few hours a day.
>
>Aug.-Sept. 96 "home hospitalization". Communication by reading on the
lips.
>10-15 kg weigh losses. Exhaustion.
>
>Oct.-Dec. 96: back to the hospital. fistula between oesophagus and
trachea.
>Placing of a gastrotomy (extraction) and jejunostomy (feeding).
>After one month, things were better, the necrosis disappeared by
itself.
>Speaking cannula enabling a weak oral communication.
>
>end of Dec. 96- mid Feb.97: Home hospitalization again. 
>Removal of jejunostomy, feeding by gastrotomy.
>placing of protheses on both feet. Improvement of the general state
until end of
>Jan.
>
>Mid Feb. 97: Back to hospital. General weakening. disability of moving
any 
>member. frequent periods of sleep. First attempts to use acupuncture
(which
>woke her up)
>
>
>
>The following pathologies were eliminated:
>herpetic encephalitis; viral encephalitis: varicella shingles virus, 
>cytomegalo virus; hepatitis A,B,C; HIV 1,2;
>mycoplasm; chlamydia; Lyme disease; coxsackie; rubella; toxoplasmosis;
>antibody antinucleus anti native dna; anti mitochondria; anti smooth
muscle;
>cryoglobulin; pathology of pancreas; ANCA; multiple sclerosis;
Guillain 
>Barre syndrom; Charcot disease
>
>
>
>Thank you.
>
was she ever exposed to a "sick building" or toxic fungus such as
stachybroykas?



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