Hi all - Alis mum here
Thanks for the replies - you are all great as usual
Just to clarify - Alison was taken off the baclofen because they didn't think it was doing anything for the dystonia or muscle tone /spasms - they were worried it would make her too "floppy" if that makes sense
My mum had MS and had a baclofen pump fitted and I know how helpful it was in controlling the spasms and muscle cramping just enough to aid transfers etc. I am also aware that the dosage needs to be just right as too much of a reduction in muscle tone can be counter-productive
Since Alison was taken off Baclofen her pain levels increased - not immediately as I would assume she had a resodual amount in her system but gradually over time she was complaining that the "cramping" pains in her lower calf were getting worse. This may have been a coincidence due to the change in the weather but I would prefer to rule out the discontinuation of baclofen as a possibility
Since being back on Baclofen these cramping pains have subsided slowly and although she still has other types of pain, this particular type is not in evidence so much.
I intends to build back up to the original 30mgs and see how things go as I understand a lot of you take these types of drugs for spasm and dystonia so could never understand why it was felt that Alison did not need Baclofen any more
I'll let you all know how things progress
Thanks again
Andrea