4 replies to this topic

[kimmi]

Hello,

my name is Kim, I have MS and can no longer walk,that I can cope with,but what is getting worse every day and is making daily activities almost impossible are my spasms and my spasticity.

I have had the test for a baclofen pump,which seemed to work on my legs and make them so much more managable to move and the spasms were non existent,my consultant thinks I should go ahead and have it implanted,,I fear that my legs will become too weak and I wont be able to stand or weightbare though.

Ive tried oral baclofen,tizanedine,sativex and cannibis and it makes my fatigue unbearable.

Please can anyone advise of thier experiences,I would be so grateful,many thanx

[stiffjelly]

 kimmi, on 10 January 2011 - 08:22 PM, said:

Hello,

my name is Kim, I have MS and can no longer walk,that I can cope with,but what is getting worse every day and is making daily activities almost impossible are my spasms and my spasticity.

I have had the test for a baclofen pump,which seemed to work on my legs and make them so much more managable to move and the spasms were non existent,my consultant thinks I should go ahead and have it implanted,,I fear that my legs will become too weak and I wont be able to stand or weightbare though.

Ive tried oral baclofen,tizanedine,sativex and cannibis and it makes my fatigue unbearable.

Please can anyone advise of thier experiences,I would be so grateful,many thanx

Hello Kim, I have just joined on today. I think about the baclofen pump myself, about 6 years ago to manage my incomplete tetraplegia but did not go through with it.
- GO FOR A TRIAL INJECTION INTO YOUR SPINAL CORD - OR WHAT EVER IS APPROPRIATE FOR YOU, UNDER YOUR SPECIALIST'S CARE.
I did have some trial injections of two drugs - they hit me reasonably hard in the first half of the day, but I guess that is to be acceptable. I could walk in the later half. The increased muscle tone
in my legs did dissipate, it was a strange softening of the muscle state (but probably as my nervous system itself was interpreting the feedback), a bit wobbly though, and a bit of a strong headache for most of the day. I don't know, there was a different state to the neuro-bung going on my spinal cord at C4.

The dosage you would get from a trial injection might be higher than a pump dosage rate the stabilisation factor.

I don't know if that has been helpful. One of the difficult things with a disability is communicating the reality of it is physiological-dimension through a neurological and muscular state, that we are cocooned in.

I can walk but it is stiff as hell and I lack lifting power in my knees.
We might be quite different in a neuro-physiological sense.
I might consider again.

Best wishes

[kimmi]

 stiffjelly, on 02 April 2011 - 05:19 PM, said:

 kimmi, on 10 January 2011 - 08:22 PM, said:

Hello,

my name is Kim, I have MS and can no longer walk,that I can cope with,but what is getting worse every day and is making daily activities almost impossible are my spasms and my spasticity.

I have had the test for a baclofen pump,which seemed to work on my legs and make them so much more managable to move and the spasms were non existent,my consultant thinks I should go ahead and have it implanted,,I fear that my legs will become too weak and I wont be able to stand or weightbare though.

Ive tried oral baclofen,tizanedine,sativex and cannibis and it makes my fatigue unbearable.

Please can anyone advise of thier experiences,I would be so grateful,many thanx

Hello Kim, I have just joined on today. I think about the baclofen pump myself, about 6 years ago to manage my incomplete tetraplegia but did not go through with it.
- GO FOR A TRIAL INJECTION INTO YOUR SPINAL CORD - OR WHAT EVER IS APPROPRIATE FOR YOU, UNDER YOUR SPECIALIST'S CARE.
I did have some trial injections of two drugs - they hit me reasonably hard in the first half of the day, but I guess that is to be acceptable. I could walk in the later half. The increased muscle tone
in my legs did dissipate, it was a strange softening of the muscle state (but probably as my nervous system itself was interpreting the feedback), a bit wobbly though, and a bit of a strong headache for most of the day. I don't know, there was a different state to the neuro-bung going on my spinal cord at C4.

The dosage you would get from a trial injection might be higher than a pump dosage rate the stabilisation factor.

I don't know if that has been helpful. One of the difficult things with a disability is communicating the reality of it is physiological-dimension through a neurological and muscular state, that we are cocooned in.

I can walk but it is stiff as hell and I lack lifting power in my knees.
We might be quite different in a neuro-physiological sense.
I might consider again.

Best wishes

[kimmi]

 kimmi, on 02 April 2011 - 05:41 PM, said:

 stiffjelly, on 02 April 2011 - 05:19 PM, said:

 kimmi, on 10 January 2011 - 08:22 PM, said:

Hello,

my name is Kim, I have MS and can no longer walk,that I can cope with,but what is getting worse every day and is making daily activities almost impossible are my spasms and my spasticity.

I have had the test for a baclofen pump,which seemed to work on my legs and make them so much more managable to move and the spasms were non existent,my consultant thinks I should go ahead and have it implanted,,I fear that my legs will become too weak and I wont be able to stand or weightbare though.

Ive tried oral baclofen,tizanedine,sativex and cannibis and it makes my fatigue unbearable.

Please can anyone advise of thier experiences,I would be so grateful,many thanx

Hello and thanQ for your reply,u r my first reply!

I have actually had the test dosage and it worked very well for me,it made my legs very floppy and I was able to bend my knees with assistance,not on my own,it made me too weak,I'm just so worried it will take what little strength I have away totally.

I can stand, but cannot put one foot in front of the other, and I am hoping that the pump will enable me to bend my knees, allowing me to walk again, but I don't know anyone who has had it done, so I am unsure wether to go ahead with it.

Best wishes

Kim


Hello Kim, I have just joined on today. I think about the baclofen pump myself, about 6 years ago to manage my incomplete tetraplegia but did not go through with it.
- GO FOR A TRIAL INJECTION INTO YOUR SPINAL CORD - OR WHAT EVER IS APPROPRIATE FOR YOU, UNDER YOUR SPECIALIST'PS CARE.
I did have some trial injections of two drugs - they hit me reasonably hard in the first half of the day, but I guess that is to be acceptable. I could walk in the later half. The increased muscle tone
in my legs did dissipate, it was a strange softening of the muscle state (but probably as my nervous system itself was interpreting the feedback), a bit wobbly though, and a bit of a strong headache for most of the day. I don't know, there was a different state to the neuro-bung going on my spinal cord at C4.

The dosage you would get from a trial injection might be higher than a pump dosage rate the stabilisation factor.

I don't know if that has been helpful. One of the difficult things with a disability is communicating the reality of it is physiological-dimension through a neurological and muscular state, that we are cocooned in.

I can walk but it is stiff as hell and I lack lifting power in my knees.
We might be quite different in a neuro-physiological sense.
I might consider again.

Best wishes

[Tetracyclone]

My one friend with MS cannot take baclofen all because of the weakness, but if you have had the trial and it does not make you weak, I think that answers the question.