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REQ: advice speechproblems

Huub Beijers buuh at knoware.nl
Mon Feb 10 10:45:11 EST 1997


l.s.
A good friend of mine - his name is Jan van Atten - is suffering from
(worsening) speechproblems and visited all kinds of different doctors
(incl. neurologists) in The Netherlands. In the attached file
(health.asc) he describes his symptoms and he asks for advice.
Any message or answer is welcome on E-mail adress: buuh at knoware.nl
Thank you very much

Huub Beijers
-------------- next part --------------
     My age is almost 65, male. Except
     for minor problems, I am in good
     health.
     
     My private address is :
     Jan H. van Atten,   PO-box 9545, 
     3007 AM, Rotterdam, Netherlands
     


1.   Description of the problem

     I suffer from speech problems. The group of throat, tongue,
     and lips muscles function with a delay. Articulation of
     words is at one time more difficult than at another. My
     speech is what they call slurred.
     Dutch neurologists call it bulbar disarthria (or 'bulbar
     disarticulation'). More specifically, it may be a motor
     neuron disease. So far no firm diagnosis or cause has been
     found.


2.   Request

     I am trying to locate people (or who may know people), that
     have the same problems, for longer than a year, People like:
     -  co-sufferers
     -  medical or paramedical specialists and
     -  technicians or companies anywhere,
     
     I am looking for the answers or clues to the following: 
     -  What do I suffer from 
     -  What lies ahead for me
     -  Is there any medicine that can cure this disorder
     -  What hard- or software is available to cope with this
        worsening disability

     I hope that my medical history in the next two paragraphs
     will make things clearer.
     

3.   Facing the problems
     My disorder is becoming a major hindrance, speech problems
     are getting worse. My speech sounds as if I constantly have
     'had a few' (drinks). I often have to tell my listeners to
     please ask me to repeat when they do not understand me.
     The worsening is a sliding scale, however there are bad and
     less worse periods. The medical world within my reach is not
     yet able to offer me a precise diagnosis of this 'wiring
     mistake' (re Oliver Sachs's 'plumbing mistake'), let alone
     any remedy.
     The experts I know are searching, but up to now they leave
          me little hope.


4.   Case history

  4.1 Late 1995 my attention was drawn to a slurred pronunci
      ation of some letter combinations. In spring 1996 it
      had become worse. My family feared I had a stroke or
      other brain damage (A stroke normally showing a sudden
      fall, instead of a steady course of worsening). 
      
  4.2 The disorder is still worsening and has its effects to
      the tongue, lips and throat. Swallowing is more diffi
      cult than normal and often goes wrong; I have less
      swallow reflex than a normal person (In hindsight,
      articulating problems may date from much earlier
      without noticing).

  4.3 First checks were a CT-scan and a blood test, ordered
      by the neurologist.
      Preliminary diagnosis: pseudo bulbar disarthria

  4.4 No anomalies were found checking muscular reflexes. The
      E.N.T. specialist (throat, nose and ear; otolaringuist)
      found nothing different from what the neurologist
      already knew: something wrong with the balance between
      nerves and muscles (Swallowing and talking is a very
      complex move).

  4.5 Blood tests were negative, except for viruses from the
      bite of a tick (Lyme disease). A 'Neostigmine test' was
      performed, without any effect.

  4.6 An MRI-scan showed no anomalies.

  4.7 A lumbal punction produced no diagnosis, but a terrible
      headache instead.

  4.8 I saw a second neurologist in Novemer '96. He was
      dedicated to speech impediments. He found no  link with
      Lime disease, despite the virus.
      He also said that, in spite of a tremor (hands, from
      the age of 15,) Parkinson's disease was to be ruled
      out. 

  4.9 Treatment with antibiotics has been suggested by the
      involved bacteriologist and application of medicine
      against motor neuron disease by the neurologist. I
      checked with the Dutch society for patients with
      muscular diseases, about newly available medicines.
      They did not want to help me without the diagnoses
      being settled.


If people recognize these symptoms, 
I would like them to contact me.


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