Questionable diagnosis

    
      Re: Questionable diagnosis
    


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Posted by CCF MD on September 21, 1997 at 20:11:07:

In Reply to: Questionable diagnosis posted by SMB on September 21, 1997 at 02:10:46:
  15 years ago at the age of 31, I awoke with what I thought was something in my eye.  After trying to clear it for 3 days, it progressed to blurred vision which in a day moved on to distinct double vision with objects appearing to be several feet apart.  After 7 days, ptosis occurred.  I  went to see a neuro-opthalmologist who tested me for Myasthenia Gravis among other things.  All of the tests were normal (VER, BER, hearing test, strabismus)   Whith no diagnosis and the images moving further and further apart, I panicked and went to a Neurologist.  I was hospitalized and had more tests which were normal (cat scan, BER,  LP)  
  The Neuro-opthomologist  diagnosed  Right third nerve plexia and called it brainstem encephalitus.  The Neurologist said that he had never heard of brainstem encephalitus was.  He diagnosed left 4th nerve palsy and possible MS.  My vision improved within 2 months but it took 2 years for all of the problems to go away.  
  I have been symptom free except for periodic blurred vision occuring primarily when I worked bending over.  In Sept. of 1993, I had another  period of double vision that lasted 6 months and then cleared up completely.  In March of 94, I experienced increasing fatigue, leg weakness and lower back pain that limits the distance that I can walk. This has become a steady problem getting worse with time.  The pain has increased and has made walking even more difficult.  
  I am now seeing a different Neurologist and have had a second spinal tap that showed elevated protein levels and 3 oligoclonal bands.  An MRI has shown approximately 30 lesions.  Interestingly enough, I have kept up my relationship with the Neuro-opthalmologist, when my vision was a problem and even in light of the new test results,  she still feels that I do not have MS.  
  Health Backround:
  Age - 46
  1972 -Unexplained but welcomed 30 lb weight loss.
  1974- Mono
  1976- Surgery - deviated septum & rhinoplasty
  1982- Double vision, nausea during interior painting of home and one week following a shot of carbocaine for dental procedure.
  1982- MVP & Spina Bifida Occulta were diagnosis
  1985- Auto accident, passenger, head on.  Radial fracture  of tibia, fibula,
  sprained back, concusion,  cervical sprain, extensive PT
  1985-   constant neck grinding or click when turning head
  1986- cat scan - found calcium deposits in cervical spine (couldn't tell if congenital or caused by car accident)  told to return if  numbness  was ever a problem because it could move but it was unlikely
  1986- Surgery to correct non-union of tibia (plate/pins/ bone graft)
  1988- Surgery, removal of plate/pins
  1988- Graves disease (controlled with 18 mo. of Prophylthiourisal)
  1990- ASD and an anuerysm between heart chambers diagnosed
  1993- Double vision, thiamine deficiency - controlled
  1994- Weakness and back pain causing fatigue without remission
  1996- Slow progression of weakness and pain without remission
  Do you think that a 2nd opinion is warranted?
  If yes, who would you suggest at the Cleveland Clinic and how much time should I allow for a physical evaluation  (1 day?  2 days?)
  Should Lymes disease be ruled out?  Tick exposure was possible.  Grew up in rural area, dogs ran free in the fields as did we.  Many deer
  Have you heard of brainstem encephalitus? I know what the words mean independently but is it a syndrome?  Thank you for your time & expertise.
==========================================================================
Brainstem Encephalitis is also refered to as Bickerstaff-Cloake Encephalitis.
It is usually characterized by subacute (days to several weeks) development in
adolescents and young adults of brain stem dysfuction, including ophthalamoplegia
(can't move eyes) Facial palsies, sensory loss, dysarthria (can't speak right), deafness, and
ataxia, and is associated with mild fever and an increased white count in the CNS. This entity
may represent a mixture of true viral infections, post infectious syndromes, and
the initial manifestations of multiple sclerosis.
If you wished to have an appontment at the Cleveland clinic you should see one of the doctors
at the Mellen Center which deals with multiple sclerosis and its look alikes. The Clinic has an 800
number 1800 CCF CARE. Ask for the neurology appointment desk.
This information is provided for general medical education purposes only. Please consult your physician for
diagnostic and treatment options of your specific medical condition.