Dear colleagues,
I have some question regarding one of my friends. Her disease is
DISTONIA GENERALISATA. It began when she was ten and then it
developed gradually. ( She had cramps in her hands first, later in
her legs and feet, then in her trunk also and in her neck.) She was
treated as a patient of the Wilson disease when she was 11 to 25 .
(The medicine they used was D-penicilamin, zinc-sulfate, Baclofen,
Kemadrin, Parkan, Tiapridal, Rivotril. These helped her always just
for a short time after she had started to take them.)
For 3 years it has been clear that her illness is not the Wilson-
disease. Since then she has not taken any drugs. Within this period
she got 3 injections into the cervical-muscles with Botulinum toxin.
These proved to be helpful, that is her cervical-muscles were not
stiff. She gets the next injuction on the first of September.
At present the greatest problem is that she has low back-pain
because of her lumbical lordosis which is increased by the stiffness
of the m.erector spinae. The low back is painful at certain
movements and for certain periods it causes radicular pain at every
movement. She can hardly walk, sitting is only possible for her if
her head is supported . When sleeping she has no cramps.
Could you give me some hints or good ideas that might be helpful
for her? I have tried to give her massages. How could I decrease
her spasms ? Could you recommend a physician who is specialised to
this kind of illnesses? Do you know anyone with a similar disease
and is ready to share her experience with us?
Two more questions: Is it possible to give the Botulinum toxin
injection into the waist? What are the side-effects of this toxin?
Thank you in advance,
Yours sincerely,
Gyula Feoldi, physiotherapist
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