In 2008 I had some sort of attack. My GP thought it was just a virus. I recovered well after a few weeks so didnt see a neuro. Nearly a year later I started to notice trouble in my walking after I had been out for an hours walk with the dog. This gradually began to get worse so in 2011 I saw a neuro/ I had an MRI and LP. The LP was clear but there was a lesion on my cervical spinal cord. Neuro dx radiation myelopathy from radiation treatment that I had in 1990. On my own research I went for hyberbaric oxygen therapy and was give warfarin (both supposed to help with (RM).
Anyway in 2012 I went to NHS. I saw a different neuro who suspected PPMS. I had another MRI and LP. The lesion was still there and brain MRI and LP was also still clear. He disagreed with the radiation theory. He dx me with cervical myelopathy - cause possible MS. Then at the end of 2012 I read an article that Avastin (normally used for bowel cancer) can treat radiation myelopathy. I went back to first neuro and had a course of Avastin. This cost me £6000! Then in June this year I had another MRI and the cervical lesion had resolved. The first nuero thinks the Avastin has done the trick and the second neuro thinks that in 2008 I had an attack of myelitis which has finally resolved leaving me with spasticity in right leg. Some neuro symptoms I have been told can evolve over a period of time and still be present if the initial problem has ‘appeared’ to have resolved on MRI.
The second neuro now does not think PPMS as he said that lesions dont resolve with PPMS. My current symptoms are spasticity in right calf and quads. Positive babinski, clonus and hyper knee reflexes again only on right.
I am currently taking baclofen and tizanidine for spasticity althought I dont think they do much. I really want to try botox but my neuro is reluctant to try it. It is annoying as I have read good reports for botox as it can swicth off spasticity if the original cause has resolved. The spasticy is giving me foot drop due to very tight calf and I cant clear my foot during the swing phase of my gait.
I have tried different doses of baclofen and tizanidine. They just seem to take the edge of the spasticity. I have also tried FES but the gadget only lifts my foot the same as I can do myself. The physio says that it is supposed to be for people of have weakness in their peripheral nerve. My problem is that my calf is so tight that the foot wont dorsoflex even when pushed or stimulated.
I stretch it about 20 times a day. I also wear a foot brace at night in order to try and stretch the muscle but this causes quite a bit of pain and the foot just springs back. My calf muscles are like a tight elastic band which just resist dorsoflexion. I am doing all the exercises that the physio has given me. It is so weird because I can use the cross trainer at the gym really well and use the leg weights machines probably better that most people my age but yet I my walking is dreadful.
The proprioception in my right leg is also really bad and I have been training on wobble boards etc in order to try and help. I am beginning to think that once you have got spasticity it is there to stay.
I know that I shouldnt complain because it is my only problem but spasticity really sucks!
Any advice greatly appreciated.
Moyna xxx
Moyna xxx