Neurological disorder. Symptoms inbearable, diagnosis unknown. Who can help?

Suzanne van Kinderen ski at
Wed Dec 30 18:09:08 EST 1998

Dear reader,

For over 4 years my mother has been suffering from unbearable but unknown
symptoms. As you can understand we are desperately looking for a solution.
We hope that by posting this message something might come up that we’ve
overlooked so far.

In 1994 the symptoms slowly started to increase, apparently without
immediate cause. The symptoms consist of painful trembling sensations in the
feet and soles of the feet; sensitive lowerback and occasionally ‘electrical
’ prickling and shocks in the head at the topleft side.
Consultations with the neurologist, dentist (to remove amalgam fillings) and
homeopath have had no results.
In the fall of 1995 a ‘cranio-sacral’ therapy was started by a
physiotherapist. This has worsened the symptoms and resulted in thumping
sensations in the head at the top left side and a swaying sensation in the
left side of the face and neck. Consultations with the specialist for
internal dis-eases, acupuncturist and psychiatrist have not had results.
In the summer of 1996 treatment at the pain treatment centre was started.
The treatment con-sisted of blocking nerves in the neck (left side), face
(left), near the collar bone just above the lungs (left) and lower back. The
last blockage (near the collar bone) has considerably relieved the pain in
the head, but the previous blockages have had no effect. Since the summer of
1996 no further testing has been conducted. However, since 1996 various
medication has been tried in order to relieve the pain. Unfortunately, no
significant results have been produced and the symp-toms are still

Nature and location
- thumping in left side of the head
- swaying, throbbing tingling sensation in left jaw, in front and behind the
ear, neck and throat
- painful prickling in neck and larynx (on the left side)
- tension in teeth, palate and on the inside of the cheek. Applying pressure
to the palate causes the tension to shift, but not subside (thumping
sensations subsides temporarily)
- ongoing stinging (nerve)pain, resembling barbed wire/stinging nettles, in
the lower back
- same stinging pain in the back of the left leg, the sole of the left foot
and right thigh
- audible cracking occasionally at the top of the skull, sometimes also in
the neck
- physical and emotional exhaustion at the end of the day.

- continuous; the entire day, every day
- chronically progressive; i.e. symptoms increase ongoing

- the thumping sensation in the leftside of the head varies from very rapid
vibration to slow vibrations accompanied by sharp lashes. Generally the
pattern is erratic
- especially if lying down; painful prickling in neck and larynx.
- walking decreases the back pain, but increases the swaying, thumping,
prickling sensation in the head.

Gravity of the situation
- normal functioning is no longer possible, pain controls her life
- walking, lying down and sitting are equally unbearable

Side effects
- so-called ‘hot flashes’ variations in hot and cold at the locations of the
prickling sensations

- countless medications have been tried, this has only resulted in
variations of the pattern of the symptoms, varying from rapid to slow pain
sensations, but the symptoms are not reduced.

Have you heard about these symptoms before or do you have any information
that could give us more insight in the cause and especially the treatment?
It would mean a great deal to us,

Please reply via e-mail.

With kind regards,

Suzanne van Kinderen
Delft, the Netherlands
e-mail: ski at

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