Clonus, etc.

Posted By Elizabeth on October 06, 1998 at 10:27:13:







My husband has been affected by some very confusing symptoms which have
the doctors scratching their heads.  
About 4 yeasr s ago my husband was diagnosed with Rheumatoid Arthritis.  
He was put on Prednisone and given Gold shots.  These treatments did help
the Arthritis.  Within about a year of this diagnosis my husband cme home
stating that he had almost fallen, that his knee had just "given out on
him" and had a coworker not been there to catch him he would have fallen.  
After about a month or so it happened again.  At the same time my husband
began to complain about frequent urination at night and during the day.  
Also there was a severe urgency to his need to urinate.  It got to the
point where he was getting little to no sleep at night.  As time went on
his legs became weaker and his bladder problem became more pronounced and
now included a sluggish bowel, to the point where he had to use laxitives to
get his bowels to move. Also he complained that he felt a "banding" pressure
around his torso right under the breast area.  His sensation from that point
down was also diminished.  One night he had complained about his hip hurting
and layed on a heating pad.  In the middle of the night when we removed the
pad I saw a blister about the size 3 quarters on his hip.  He had been
burned and never felt it.

His physicians determined:
1. His prostrate is normal.  No enlargement.
2. His bladder instead to fully contracting when full was partially contracting
very frequently.  This caused the urgency to urinate though little came out.
3. He had clonus in is right leg.  It was quite the show for the interns (the
hospital is a teaching hospital).

4. An MRI determined that he had inflamaiton in the thorasic and cervical
region of his spinal cord.
5. He had Nodules on his lungs which through a biopsy were determined to
be benign.
6. He has been tested for:
   a. MS - negative
   b. HIV - negative
   c. Fungus in the blood - negative
   d. lupus - negative
   e. lumbar puncture - all tests yielded negative results
   f. Sarcoidosis (sp?) - negative
7. Tests include:
   a. emg - very painful
   b. mri
   c. ct
   d. lumbar puncture
   e. blood tests
   f. cystoscopy
   g. colonoscopy
   h. I don't remember what it is called, but an exploratory procedure
      where they put a tube up through your nose in order to look at the
      lungs.
He has had just about every test you can imagine which have all yielded negative results.
His condition has deteriorated to the point where he is confined to a skilled
nursing facility where he has to be catherized 3 time a day, he still needs
to use laxitives to move his bowels, clonus is now exhibited in both legs.
My husband has a urologist, neorologist, cardiologist, internist, and a pulmonary
specialist.  None of them can find a diagnosis.  They are treating the symptoms.
1. Physical and occupational therapy for the loss of muscle tone.
2. Cathertarization for the inadequate bladdr function.
3. Laxatives for his sluggish bowels
4. Prednisone for the arthritis.  he is now down to 2.5 mg.  he hasn't had
any symptoms of the rheumatoid arthritis in over a year.
After all of the above and probably some things that I have forgotten, there
still is no diagnosis.  No answers.  My concern is that, though his legs and
back are getting stronger due to the physical and occupational therapy, if
the reason for the "illness" is not found once he gets to the point where
the doctors feel he can go home he will revert back to the stage that put
him in the hospital in the first place.
Any light you can shed on this problem will be greatly appreciated.  As you
can imagine, we are at our wits end.  It seems we have exhausted all the
"doctor" options here.  Are there other facilities that specialize in this sort of
thing?  Our doctors have spent nights in the library with no answers.
I know this is a long post.  It's a log story that we are still trying to
find an ending to.
Thank you,
Elizabeth