Until recently my wife's neck was so stiff that her chin seemed permanently pinned to her chest. Fortunately she had no pain. A weak dose of botox on each side of her neck made no difference but a slightly stronger dose last October, plus a much more structured use of a collar for 2-3 hours a day, has resulted in a marked improvement. Her neurologist is reluctant to increase or even repeat the dose because of the risk of side effects to the swallowing muscles and to my wife's breathing.
Now her arms and legs are becoming increasingly stiff ( incidentally her fingers frequently "lock" onto something with a fearsome grip that I have to prise open as gently as possible). Still fortunately no pain. The neurologist has prescribed Baclofène - we live in South West France, I believe a similar drug is called Lioresal - in a progressively increasing dosage to 9 pills a day, currently half that. He is hoping that this will relieve the rigidity in the limbs and further improve the neck without need to risk the use of botox again. So far, after two weeks, there has been no improvement but no further deterioration either. The possible common side effects of constipation and/or somnolence have not so far materilized.
Does anyone have suggestions for successful treatment of this "spasticity"?
I should add that my wife can still walk, closely supported, for very short distances. Her nourishment is catered for by a PEG each night so she gets all the calories/protein needed to sustain her strength.
"Bon courage" as they say here, to all.