Baclofen pump in UK

[Guest guest]

Hi,

Does anyone know where I can find a medic in the UK that has

experience with pump implants for PLS. Or if it is actually licensed

for use. As far as I can tell several hospitals in England are

running trials but only for children with Cerebal Palsy.

Our GP has never heard of ITB therapy and the neurologist has

dismissed as not effective! and continues to recommend increasing

oral baclofen " up to as much as you can stand " .

My wife was diagnosed with PLS 3 months ago but she is not typical.

In less than 6 months she has gone from no symtoms to today where she

can only walk a few steps with a walker, has shallow breathing (FVC

of 65%), slurred speech, continual spasms in her jaw making eating

and drinking difficult, and she has stiffness not only in her legs

and arms but in her torso as well. At the moment she is taking 60mg

of baclofen a day and also ramping up tizanidine.

Pain and spasms in her legs keep her awake at night so life for her

is becoming unbearable.

Any information would be appreciated

In London, UK

[Guest guest]

Hi ,

I am sorry I really cant ansewer your question about the UK. There is a sight

that you can go to too find others in your area that might be ableto help you.

http://www.geocities.com/freyerse/plsdb.html

I would like to welcome you and your wife to our group.

You will find many ansewers to questions and fantastic support.

It sounds like your wife is progressing fast. This darn disease seems to touch

everyone a little different in many ways.

I am sorry I cant help any more than this.

Please keep in touch and ask away at questions and we will do our best. Take

care and God bless. Sandy in Oregon

Baclofen pump in UK

Hi,

Does anyone know where I can find a medic in the UK that has

experience with pump implants for PLS. Or if it is actually licensed

for use. As far as I can tell several hospitals in England are

running trials but only for children with Cerebal Palsy.

Our GP has never heard of ITB therapy and the neurologist has

dismissed as not effective! and continues to recommend increasing

oral baclofen " up to as much as you can stand " .

My wife was diagnosed with PLS 3 months ago but she is not typical.

In less than 6 months she has gone from no symtoms to today where she

can only walk a few steps with a walker, has shallow breathing (FVC

of 65%), slurred speech, continual spasms in her jaw making eating

and drinking difficult, and she has stiffness not only in her legs

and arms but in her torso as well. At the moment she is taking 60mg

of baclofen a day and also ramping up tizanidine.

Pain and spasms in her legs keep her awake at night so life for her

is becoming unbearable.

Any information would be appreciated

In London, UK