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
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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.
